2 Caffeine....................................................................................................................... 20 Alcohol and Street Drugs .......................................................................................... 20 Hobbies and Interests ............................................................................ 21 Advice for Family and Friends ................................................................. 22 Getting Help for a Loved One ................................................................ 22 What to Say to Someone Who is Deluded or Hallucinating .................. 22 How to Help Someone With Schizophrenia Stay Well .......................... 23 Encouraging Them to Take Medication....................................................................23 Avoiding Criticism and Over-Involvement...............................................................23 Schizophrenia: A View From the Inside................................................... 24 Schizophrenia: A Psychiatrist‟s View ........................................................ 27 Schizophrenia: A Personal And Professional Perspective ........................ 31 Schizophrenia: A Social Perspective ........................................................ 44 Useful Resources.......................................................................................52 Books on Schizophrenia ........................................................................52 Introductory Books on Schizophrenia ...................................................................... 52 Day-to-Day Coping Strategies for Families .............................................................. 53 Schizophrenia & Related Medications (Antipsychotics) ......................................... 53 Preventing Schizophrenia ..........................................................................................54 Schizophrenia and Legal Issues ................................................................................56 Financial Planning with a Mentally ill Child ............................................................56 Housing and Accomodation for the Mentally Ill......................................................56 Childhood Schizophrenia (Children under the age of 14 years) .............................56 Christianity and Schizophrenia ................................................................................. 57 Personal, Hopeful Stories on Schizophrenia ............................................................ 57 Books for Wives and Husbands People with Schizophrenia...................................59 Books for Brothers and Sisters, and Sons and Daughters of People with Schizophrenia ................................................................................................................. 60 Internet Resources ............................................................................... 62 Resources from www.schizophrenia.com ............................................ 63 Recovery from Schizophrenia (including paranoid schizophrenia and schizoaffective disorder ..................................................................................................63 Understanding the Person with Schizophrenia and Coping with the Issues .........63 Schizophrenia and Jail, Crime and Legal issues ..................................................... 64

3 Information for those Married to People that Have Schizophrenia ...................... 64 Good Resources to help you Cope with Schizophrenia .......................................... 64 Recognizing and Avoiding Schizophrenia Relapse ................................................. 64 Other resources to help you cope with schizophrenia ............................................ 64 Resources ................................................................................................................... 64 Important Potential Problems to Watch For............................................................65 Health Insurance and Schizophrenia [USA Specific] ..............................................65 Government and Legal Resources.............................................................................65 Homelessness/Missing Persons and the Mentally Ill [All external Links] ........... 66 Estate Planning for those with Schizophrenia ........................................................ 66 Electroconvulsive Therapy (ECT) ............................................................................ 66 Work and those with Schizophrenia ........................................................................ 66

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WHAT IS SCHIZOPHRENIA? Schizophrenia is a serious mental illness that affects the brain, meaning that there are disruptions to the way people think and experience things. It often begins in early adulthood and frequently becomes a chronic, long-term problem which affects all aspects of a person‘s life. Schizophrenia belongs to a group of illnesses called ‗psychoses‘. This means that at some stage of the illness, psychosis generally occurs. The term psychosis refers to a temporary or permanent state where a person loses touch with reality, due to a malfunction in the brain. This means that a person suffering from schizophrenia may hear voices which no one else can hear, and which often say cruel or critical things, or see things that other people can‘t see, or smell things that other people can‘t smell. These features of psychosis are collectively known as hallucinations. A person suffering from schizophrenia may also develop delusions. These are fixed, false beliefs with no basis in reality – for example, believing that people on television are talking about them, or that their thoughts are being controlled by other people. This can be very frightening, and may lead to bizarre behaviour, such as avoiding people or saying odd things to friends and family. Schizophrenia can affect people in different ways – it has even been said that no two cases of schizophrenia are identical.1 Often people exhibit a combination of symptoms – but in some cases, different types of symptoms might emerge at different points of the illness. Symptoms of Schizophrenia The symptoms of problems of schizophrenia generally fall into two categories: psychotic (or positive) symptoms and negative symptoms. The positive symptoms of schizophrenia are so called because they seem to be experiences that are ‗added on‘ to a person – in contrast to negative symptoms, which are considered to be features that are ‗lost‘ by a person experiencing schizophrenia. Positive Symptoms

The positive symptoms of schizophrenia are mostly seen in the acute, or florid stages of the illness. They reflect distortions of reality – and may come on gradually, or very quickly. These symptoms are more responsive to medication than negative symptoms. Auditory hallucinations are the most common of all positive symptoms. They are mostly experienced as voices. To a person with schizophrenia, these voices sound just like people speaking to them – people with the illness cannot differentiate between what is real (a friend speaking to them) and what is a hallucination. Voices might be heard in

5 the second person (for example someone saying ―You stink‖, ―You‘re ugly‖. Sometimes, voices might command a person to do something (by saying, for example, ―Jump off the bridge‖, ―Take an overdose‖). People with schizophrenia may also have third person hallucinations, which most commonly takes the form of two or more voices taking among themselves, or commenting on the person‘s behaviour. Third person hallucinations are considered to be more typical of schizophrenia than any of the other psychoses. In addition to voices, auditory hallucinations can involve noises, such as buzzing, screeching, and ringing. Additionally, people with schizophrenia may think that their own thoughts are being broadcast, or can be heard by other people. They also might think that other people‘s thoughts are being forced into their own minds, or that their thoughts have been stolen from their heads. Hallucinations of all five senses may be experienced. In addition to auditory hallucinations, people may have tactile hallucinations (feeling as though they are being pushed, touched, or held down), visual hallucinations (seeing things that aren‘t there, feeling that colours are brighter than they should be), hallucinations of smell, and hallucinations of taste. Delusions are also common in schizophrenia. People develop fixed, unshakable beliefs based on their psychotic reality, and it is very difficult to try and reason with someone experiencing delusions, because to the person, the delusions are very real. They might believe that they are being hunted by Thought Disorder government agents, or that aliens ―I find human witness verified substantiated as actual are communicating with them material human endouvair and a new revelation of sex through the radio or television. practice, in this it would seem the incorporation of voice Sometimes, delusional ideas can be barrage plays an important part, her we have it 24 hours a grandiose, such as someone day aand this has carried on for the past ten years it would believing that they are able to only cover one period, along with the body-head Activation by Radio-Active methods, it has even been developed and control the weather or are a used by business sales, even to voice head communication member of a royal family. In severe cases of schizophrenic psychosis, a condition known as thought disorder develops. This means that when a person experiencing thought disorder talks, their sentences don‘t make sense,

method of everything possible, to even include this type of distance sex practice box seses taking part the single being freely induced to be the Incubus and Succubus, or Induced until self-conscience....‖

6 and they invent new words and phrases.2

Negative Symptoms

It is often said that the negative symptoms of schizophrenia are harder to cope with than the positive symptoms. These symptoms are also much harder to treat than the psychotic symptoms. Negative symptoms can lead to a decline in a person‘s ability to hold a conversation, their speech might lack inflection, and they may have a ‗blank‘ or unchanging expression. People with negative symptoms might be neglectful of the needs and emotions of others, which can be misinterpreted as the person being uncaring, hurtful or callous. Negative symptoms generally lead to a lack of energy and motivation, a decreased interest in social and recreational activities, and the person often lets social relationships dwindle away. These type of negative symptoms are often misinterpreted as ‗laziness‘. Who Gets Schizophrenia – and When Do They Get It? Anyone can get schizophrenia – any race, any social class, regardless of how intelligent or successful they might be. Everyone is at risk – but certain people will have an increased risk of developing schizophrenia, for example if they have a family history of the illness. Roughly 1% of the world‘s population is affected by schizophrenia. It usually develops in early adulthood, but it can, in fact, occur at any age. It is less likely, however, to occur before puberty. There are additional risk factors for developing schizophrenia, such as adverse life events, social isolation, difficult births (particularly a lack of oxygen at the time of birth), and, significantly, the use of recreational drugs such as cannabis, LSD, amphetamines and cocaine. Course of the Illness There are four general patterns of schizophrenia: 1. A single episode, after which the person makes a complete recovery (22% of all sufferers have this outcome).

7 2. Bouts of illness with acute symptoms, very few negative symptoms, and identifiable causes of the psychotic break. Good recovery, with no impairment between bouts of illness. (35% of all sufferers have this outcome). 3. Chronic illness with negative symptoms and disturbances of thought processes. Few signs of acute illness (psychotic symptoms), no identifiable causes. Social isolation, withdrawal and odd behaviour. This outcome has poor prognosis. (8% of all sufferers have this outcome). 4. A combination of acute illness and gradually increasing chronic difficulties. (35% of all sufferers have this outcome).

Types of Schizophrenia Paranoid Schizophrenia

This is the most common type of schizophrenia. A person suffering from paranoid schizophrenia suffers from fixed delusions that are accompanied by auditory hallucinations that generally support the delusions. Paranoid delusions can include: feelings of being persecuted, being talked about on the news, being on a special mission to save mankind. Hallucinatory voices may threaten the person, give commands, or laugh, whistle or hum at them. Hallucinations of taste can occur, leading a person to think they are being poisoned; people may ‗see‘ visual hallucinations of people following them, or they may sometimes think that a part of their body has been stolen away from them or is otherwise missing. Hebephrenic Schizophrenia

This type of schizophrenia most often begins between the ages of 15 and 25 and involves more negative symptoms than positive. It has a poorer prognosis than other forms of schizophrenia. Delusions and hallucinations are less obvious, and behaviour has a tendency towards the irresponsible and unpredictable. The person‘s mood is often shallow, inappropriate to the circumstances, and accompanied by giggling, strange grimaces, and peculiar manner. Thoughts seem to be disorganised, with speech being rather rambling and difficult to follow. Catatonic Schizophrenia

This form of schizophrenia is characterised by disturbances of movement, which tend to alternate between the extremes of excitement and stupor/ mutism. People with this form of schizophrenia show signs of automatic obedience of instructions. Strange, often symbolic body postures can be maintained for long periods of time. Catatonic schizophrenia is very rare in the Western world, but is frequently see n in developing countries.

8 Residual Schizophrenia

Residual schizophrenia is considered to be a chronic stage of the development of schizophrenia, in which there has been recovery from the acute stages of the illness, leaving prominent negative symptoms in the wake of the positive symptoms. Myths about Schizophrenia Contrary to popular belief, schizophrenia isn't the same as a split personality or multiple personality. Although the word "schizophrenia" means "split-mind," this refers to a disruption of the usual balance of emotions and thinking.3 A person with a split, or multiple, personality is generally said to be suffering from a dissociative personality disorder. It is commonly believed that people with schizophrenia are more likely to be violent towards others than ‗normal‘ people. In fact, people with schizophrenia are more likely to harm themselves than harm other people. In a recent study only 6% of all people convicted of homicide had a history of schizophrenia.4 In the past twenty years, the number of murders committed by people with schizophrenia has not increased, but the number of murders committed by other, ‗normal‘, people has more than doubled!5 There are more murders by people who are depressed than those who have schizophrenia. 6

HOW IS SCHIZOPHRENIA DIAGNOSED? The diagnosis of schizophrenia lies entirely in a psychiatrist‘s hands. There are no blood tests or brain scans that can establish the diagnosis with absolute certainty. A psychiatrist will make a diagnosis by interviewing the person in great detail; the interview may last an hour or more, and involve questions about the person‘s symptoms, and their life history. Often, a psychiatrist will talk to other people who know the person well, because it is sometimes difficult to get answers from someone in the acute stages of schizophrenia. A diagnosis of schizophrenia is made according to one of two sets of criteria, the American DSM-IV (TR), or the World Health Organisation‘s ICD-10. DSM-IV-TR Diagnostic Criteria for Schizophrenia7 A. Characteristic symptoms: Two (or more) of the following, each present for a significant portion of time during a 1-month period (or less if successfully treated): 1. delusions 2. hallucinations 3. disorganized speech (e.g., frequent derailment or incoherence) 4. grossly disorganized or catatonic behavior 5. negative symptoms, i.e., affective flattening, alogia, or avolition Note: Only one Criterion A symptom is required if delusions are bizarre or hallucinations consist of a voice keeping up a running commentary on the person's behavior or thoughts, or two or more voices conversing with each other. B. Social/occupational dysfunction: For a significant portion of the time since the onset of the disturbance, one or more major areas of functioning, such as work, interpersonal relations, or self-care, are markedly below the level achieved prior to the onset (or when the onset is in childhood or adolescence, failure to achieve expected level of interpersonal, academic, or occupational achievement). C. Duration: Continuous signs of the disturbance persist for at least 6 months. This 6-month period must include at least 1 month of symptoms (or less if successfully

10 treated) that meet Criterion A (i.e., active-phase symptoms) and may include periods of prodromal or residual symptoms. During these prodromal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or two or more symptoms listed in Criterion A present in an attenuated form (e.g., odd beliefs, unusual perceptual experiences). D. Schizoaffective and Mood Disorder exclusion: Schizoaffective Disorder and Mood Disorder With Psychotic Features have been ruled out because either (1) no Major Depressive, Manic, or Mixed Episodes have occurred concurrently with the active-phase symptoms; or (2) if mood episodes have occurred during active-phase symptoms, their total duration has been brief relative to the duration of the active and residual periods. E. Substance/general medical condition exclusion: The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition. F. Relationship to a Pervasive Developmental Disorder: If there is a history of Autistic Disorder or another Pervasive Developmental Disorder, the additional diagnosis of Schizophrenia is made only if prominent delusions or hallucinations are also present for at least a month (or less if successfully treated). Classification of longitudinal course (can be applied only after at least 1 year has elapsed since the initial onset of active-phase symptoms): 

Episodic With Interepisode Residual Symptoms (episodes are defined by the re-emergence of prominent psychotic symptoms); also specify if: With Prominent Negative Symptoms



Episodic With No Interepisode Residual Symptoms



Continuous (prominent psychotic symptoms are present throughout the period of observation); also specify if: With Prominent Negative Symptoms



Single Episode In Partial Remission; also specify if: With Prominent Negative Symptoms



Single Episode In Full Remission Other or Unspecified Pattern

ICD-10 Diagnostic Criteria for F20 Schizophrenia8 The schizophrenic disorders are characterized in general by fundamental and characteristic distortions of thinking and perception, and by inappropriate or blunted

11 affect. Clear consciousness and intellectual capacity are usually maintained, although certain cognitive deficits may evolve in the course of time. The disturbance involves the most basic functions that give the normal person a feeling of individuality, uniqueness, and self-direction. The most intimate thoughts, feelings, and acts are often felt to be known to or shared by others, and explanatory delusions may develop, to the effect that natural or supernatural forces are at work to influence the afflicted individual's thoughts and actions in ways that are often bizarre. The individual may see himself or herself as the pivot of all that happens. Hallucinations, especially auditory, are common and may comment on the individual's behavior or thoughts. Perception is frequently disturbed in other ways: colors or sounds may seem unduly vivid or altered in quality, and irrelevant features of ordinary things may appear more important than the whole object or situation. Perplexity is also common early on and frequently leads to a belief that everyday situations possess a special, usually sinister, meaning intended uniquely for the individual. In the characteristic schizophrenic disturbance of thinking, peripheral and irrelevant features of a total concept, which are inhibited in normal directed mental activity, are brought to the fore and utilized in place of those that are relevant and appropriate to the situation. Thus thinking becomes vague, elliptical, and obscure, and its expression in speech sometimes incomprehensible. Breaks and interpolations in the train of thought are frequent, and thoughts may seem to be withdrawn by some outside agency. Mood is characteristically shallow, capricious, or incongruous. Ambivalence and disturbance of volition may appear as inertia, negativism, or stupor. Catatonia may be present. The onset may be acute, with seriously disturbed behavior, or insidious, with a gradual development of odd ideas and conduct. The course of the disorder shows equally great variation and is by no means inevitably chronic or deteriorating (the course is specified by five-character categories). In a proportion of cases, which may vary in different cultures and populations, the outcome is complete, or nearly complete, recovery. The sexes are approximately equally affected by the onset tends to be later in women. Although no strictly pathognomonic symptoms can be identified, for practical purposes it is useful to divide the above symptoms into groups that have special importance for the diagnosis and often occur together, such as: a. thought echo, thought insertion or withdrawal, and thought broadcasting; b. delusions of control, influence, or passivity, clearly referred to body or limb movements or specific thoughts, actions, or sensations; delusional perception; c. hallucinatory voices giving a running commentary on the patient's behavior, or discussing the patient among themselves, or other types of hallucinatory voices coming from some part of the body; d. persistent delusions of other kinds that are culturally inappropriate and completely impossible, such as religious or political identity, or superhuman powers and abilities (e.g. being able to control the weather, or being in

12 communication with aliens from another world); e. persistent hallucinations in any modality, when accompanied either by fleeting or half-formed delusions without clear affective content, or by persistent over-valued ideas, or when occurring every day for weeks or months on end; f. breaks or interpolations in the train of thought, resulting in incoherence or irrelevant speech, or neologisms; g. catatonic behavior, such as excitement, posturing, or waxy flexibility, negativism, mutism, and stupor; h. "negative" symptoms such as marked apathy, paucity of speech, and blunting or incongruity of emotional responses, usually resulting in social withdrawal and lowering of social performance; it must be clear that these are not due to depression or to neuroleptic medication; i. a significant and consistent change in the overall quality of some aspects of personal behavior, manifest as loss of interest, aimlessness, idleness, a selfabsorbed attitude, and social withdrawal. Diagnostic Guidelines The normal requirement for a diagnosis of schizophrenia is that a minimum of one very clear symptom (and usually two or more if less clear-cut) belonging to any one of the groups listed as (a) to (d) above, or symptoms from at least two of the groups referred to as (e) to (h), should have been clearly present for most of the time during a period of 1 month or more. Conditions meeting such symptomatic requirements but of duration less than 1 month (whether treated or not) should be diagnosed in the first instance as acute schizophrenia-like psychotic disorder and are classified as schizophrenia if the symptoms persist for longer periods. Viewed retrospectively, it may be clear that a prodromal phase in which symptoms and behavior, such as loss of interest in work, social activities, and personal appearance and hygiene, together with generalized anxiety and mild degrees of depression and preoccupation, preceded the onset of psychotic symptoms by weeks or even months. Because of the difficulty in timing onset, the 1-month duration criterion applies only to the specific symptoms listed above and not to any prodromal nonpsychotic phase. The diagnosis of schizophrenia should not be made in the presence of extensive depressive or manic symptoms unless it is clear that schizophrenic symptoms antedated the affective disturbance. If both schizophrenic and affective symptoms develop together and are evenly balanced, the diagnosis of schizoaffective disorder should be made, even if the schizophrenic symptoms by themselves would have justified the diagnosis of schizophrenia. Schizophrenia should not be diagnosed in the presence of overt brain disease or during states of drug intoxication or withdrawal.

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HOW IS SCHIZOPHRENIA TREATED? Medication Drug treatment is an essential part of treatment. It is used to control the acute psychotic symptoms, and to help prevent relapses in the future. The main drugs used in the treatment of schizophrenia are called antipsychotics. There are two types of antipsychotics – classified as ―old‖ – or ―typical‖ – and ―new‖ – or ―atypical‖. “Old” Antipsychotics

The ―old‖ antipsychotics were the first drugs found to be successful in treating schizophrenic illnesses. They work by blocking a specific chemical messenger, dopamine, at the nerve endings in the brain. These ―typical‖ antipsychotics include chlorpromazine, thioridazine, fluphenazine, haloperidol, and pimozide. Unfortunately, these older antipsychotics have more side effects than the newer, ―atypical‖ antipsychotics, and so fewer people are offered ―typical‖ antipsychotic drugs now. “New” Antipsychotics

The ―new‖, ―atypical‖ antipsychotics are so called because the way they work is more complex than the ―typical‖ antipsychotics, and because their side effects are much less of a problem. Some ―atypical‖ antipsychotics work on the negative symptoms as well as the positive symptoms, and they can also help with mood disturbances, helping to improve depression. ―Atypical‖ antipsychotics include risperidone, aripiprazole, olanzapine, and quetiapine. In addition, there is clozapine, which is the only medication for schizophrenia that has shown to have a significant effect on negative symptoms. Side Effects of Antipsychotics

All antipsychotics have the potential to cause a rather wide range of side effects – but then, most medications cause some side effects. However, there are some side effects that are specific to antipsychotics. Extra pyramidal side effects (Parkinsonian side effects): EPSEs can occur because antipsychotics block dopamine-using cells in the brain, which is also affected in Parkinson‘s disease. These side effects are almost always reversible, but have the potential to occasionally be permanent. They occur more frequently with the ―typical‖ antipsychotics – up to 80% of persons on ―typical‖ antipsychotics will have EPSEs. ESPEs include: dystonic reactions (cramp-like muscle spasms affecting any voluntary muscle group including the eye muscles); dystonia (sustained cramp-like abnormalities); Akathisia (restlessness and the inability to sit still); Parkinsonia symptoms (rhythmic tremor, immobility of the muscles, loss of facial expression, slow body movements).

15 Anticholinergic (muscarinic) side effects: These side effects occur because the medications attach to cell receptors in the body called ―muscarinic‖ receptors. These effects include: rapid heart rate; dry mouth; inability or difficulty urinating; constipation; blurred vision. These effects usually soon wear off and are rarely severe enough to warrant stopping the medication. Other side effects: There can be a drop in blood pressure when standing up, but this usually wears off quite quickly. ―Typical‖ antipsychotics and certain ―atypical‖ antipsychotics can cause a rise in a hormone called prolactin. This can cause menstrual periods to stop in women, milk secretion in women, and impotence in men, as well as acne in both sexes. Sometimes, a psychiatrist may consider a change in medication if these side effects become distressing to the patient. Weight gain is another common side effect of almost all antipsychotic medications. Stopping Antipsychotic Medication

As a general rule, most psychiatrists will ask a person with schizophrenia to keep taking their medication for a full year after the psychotic symptoms have stopped. If, after a careful withdrawal, the symptoms recur, then the medication should be taken for between two and five years. If there is another relapse after another attempt to stop, then the person should be encouraged to take the medication for an indefinite period to ensure their wellness. Their side effects and physical health should be carefully monitored. Other Medications

Antidepressants are almost always offered to people with schizophrenia at some stage of their illness, because depression is a co-morbid condition that often accompanies schizophrenia. Commonly prescribed antidepressants include Citalopram, fluoxetine, paroxetine and setraline. Mood Stabilisers may also be offered to people with schizophrenia, in addition to antipsychotics, particularly if mood is a particular problem. The most common mood stabilisers are lithium, Carbamazepine, valporate, lamotrigine and gabapentin. Psychological Therapies Cognitive Behavioural Therapy

Cognitive Behavioural Therapy (CBT) was originally developed for depression, aiming to break the cycle of negative thoughts. Recently, however, CBT had been developed for schizophrenia, focusing directly on core psychotic symptoms – delusions and hallucinations. In CBT for psychosis, people with schizophrenia are taught to take responsibility for, and control of, their psychotic experiences. The goal of therapy is to reduce the distress associated with delusional beliefs and hallucinations, and to learn to contradict beliefs by weighing evidence, as well as evaluating negative beliefs.

16 CBT isn‘t suitable for everyone with schizophrenia. The person with schizophrenia must be willing to embark on therapy, and have enough cognitive ability to understand the techniques involved. Cognitive Enhancement Therapy

Cognitive Enhancement Therapy (CET) is an evidence based practice that helps people with schizophrenia and related mental illnesses improve their processing speed, cognition (attention, memory, and problem solving), and social cognition (the awareness to interact wisely with others). Research strongly suggests that impairments in these mental capacities contribute to functional disability in people with schizophrenia. CET rehabilitates these capacities and, thus, maximizes success in all activities of recovery. As a result, CET participants increase their potential to engage in meaningful social roles and to live independent, self determined, and satisfying lives in the community. CET is not cognitive behavioral therapy. Nor does it focus on teaching ―skills‖. CET helps individuals develop and enhance the mental capacities that produce the awareness for self-directed social interactions that are wise, appropriate, and effective. CET provides holistic, structured activities to help people with schizophrenia and related mental illnesses jump-start neurodevelopment, cognitive development, and social cognition. Therapists in CET are called coaches, because they are trained to help people function better. Coaches are trained to respectfully challenge and support participants, to notice and reflect upon the feelings and thoughts of the self and others and to execute speech and actions that are appropriate, wise, and effective. These interventions occur in every CET session and include the following: • Computer-based exercises/interactive software • Group-based interactions • Individual (one-on-one) coaching sessions with each CET participant. Electroconvulsive Therapy (ECT) Despite the negative publicity that ECT has received, this treatment can be beneficial for some people with schizophrenia. ECT is most useful in treatment-resistant cases, and in patients who experience confusion and mood disturbance. Modern ECT uses unilateral electrodes on the non-dominant lobe, thus minimizing memory loss – although some memory loss may nonetheless occur. This is the major side effect of the procedure.

17 For some patients, only 12 treatments with ECT are necessary, but others may need 20 or more treatments to get effective relief. For some individuals, monthly maintenance treatments might be beneficial if ECT provides relief but is followed by relapse.

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HOLISTIC APPROACHES TO TREATING SCHIZOPHRENIA In addition to psychological therapies, psychiatric consultations and medication, there are a range of other things that people with schizophrenia can do to help themselves, and to help relieve their symptoms. D ie t A growing body of evidence suggests that the course and severity of schizophrenic symptoms might be at least partly controllable through diet.9 Carbohydrates

Results published by Duke University researchers in the February 2009 issue of Nutrition and Metabolism indicated that adhering to a low-carbohydrate and gluten-free diet may reduce the schizophrenia symptoms. The researchers cited the case of a 70year-old patient diagnosed with schizophrenia in her late teens who reported having experienced auditory and visual hallucinations throughout her life. After undertaking a diet that restricted her carbohydrate intake to under 20 g per day, the patient reported that after just eight days, she stopped hearing voices and seeing skeletons. There were no changes in her treatment, including type or levels of medication, other than modifying her diet to include mainly meats (beef, poultry and ham), fish, green beans, tomatoes, diet drinks and water. Gluten

Gluten sensitivities have also been associated with schizophrenia. As long ago as 1966, after noting that countries with lower wheat consumption during WWII reported fewer patients hospitalized with schizophrenic symptoms, researcher Dr. F.C. Dohan posited that in at least some patients, a genetic defect exacerbated by gluten caused many of the same psychiatric symptoms, suggesting that in some cases there may be a link between celiac disease and schizophrenia. Patients with schizophrenia wishing to adhere to a gluten-free diet should read ingredient labels very carefully. Foods manufactured after 2006 must list "wheat" if it is an ingredient in any form. Unfortunately, avoiding gluten is not easy given the modern, Western diet. Not only is it found in obvious sources such as wheat, millet, soybean, and potato flours, but also in seeds (sunflower, sesame), nuts, corn (including cornstarch, corn syrup, cornmeal and corn flour), barley, rye, spelt, rice, whey and artichokes. Several organizations, notably the Gluten-Free Certification Organization and the Celiac Sprue Association, authorize gluten-free foods to display a certification mark. Select grocery stores, health food stores and online suppliers provide gluten-free

9

http://www.ehow.co.uk/way_5632460_schizophrenia-diet.html?cr=1

19 substitutes for flour that allow you to cook and bake healthier versions of almost any recipe that requires wheat flour. Polyunsaturated Fatty Acids

The human body requires a certain amount of essential polyunsaturated fatty acids--Omega-3 and Omega-6 fatty acids---for normal nerve and cell health. An excess of the latter, however, can interfere with the health benefits of the former, and has been linked to an increase in certain illnesses. Research suggests a healthy diet should include no more than four times as much Omega-6 as Omega-3. The University of Maryland Medical School website cites six studies that showed that maintaining proper levels of fatty acids through dietary changes or by ingesting supplements may benefit patients with schizophrenic symptoms, and that polyunsaturated essential fatty acids may also make the medications often used to treat the illness more tolerable and thus more likely to be taken as prescribed. Omega-6 fatty acids are found in most vegetable oils such as sunflower and safflower, as well as flaxseed, cottonseed and soybean oils. They are also found in poultry, avocados, nuts, eggs, chicken and turkey. Although our bodies cannot manufacture Omega-6 fatty acids, the average American gets more than enough through diet alone and would not benefit from supplements. That is because Omega-6 can be found in most margarines, snacks, crackers, cookies, baked goods and fast foods. Maintaining a healthy balance of somewhere between 1:1 and 4:1 (Omega-6 to Omega-3) may require as little change as cutting down on snack foods and "junk" calories to eliminate the soybean oil found in so many of these foods today. Since many of these snack foods also contain gluten (see above), reducing or eliminating them from your diet may be doubly beneficial. Omega-3 fatty acids (eicosapentaenoic acid, or EPA, and docosahexaenoic acid, or DHA), in contrast, are less common in the modern diet. The primary natural source of EPA and DHA is the oil of such cold water fish as salmon, mackerel, herring, black cod, anchovies, bluefish and sardines. They can also be found in abundance in flaxseed oil. The late British psychiatrist Dr. David Harrobin argued that the cause of schizophrenia is not, as it generally believed, caused by an excess of the neurotransmitter dopamine but by a breakdown of the synapses sheathed in fatty acids. He suggested that EPA could drastically reduce the symptom of schizophrenia. Exercise Regular exercise (20 minutes of a raised heart rate three times a week), such as jogging, cycling, swimming or even a daily brisk walk, has a positive effect on mental health and well being. Exercise has been proved to be equally as effective as alleviating depression as SSRI antidepressants, and it has also been seen to be significant in helping people with schizophrenia to cope with the symptoms of their illness. Additionally, there

20 is some evidence10 that regular exercise can help to stimulate new brain cell growth, and help to combat some of the size effects of antipsychotic medications, particularly the weight gain seen with almost all antipsychotics. Avoiding Bad Habits Smoking

Between 80 and 90% of people with schizophrenia are heavy smokers. It has been suggested that this is because nicotine reduces anxiety and improves concentration in some people, and therefore, smoking is a form of self-medication for someone with schizophrenia. However, smokers with schizophrenia typically require higher doses of antipsychotics than non-smokers. Furthermore, there are well-known consequences of smoking that affect schizophrenics equally as much as non-schizophrenics. Studies have also suggested that smoking increases the chance of EPSE and Akathisia. Caffeine

Caffeine intake among people with schizophrenia is equally as high as the incidence of smoking. High caffeine intake can produce the symptoms of caffeine intoxication, including nervousness, restlessness, insomnia, excitement, rapid heartbeat and muscle twitching. In addition, studies have demonstrated that people with schizophrenia who have a high caffeine intake experience a worsening of their symptoms. This may be because caffeine interferes with the absorption of antipsychotic drugs. Alcohol and Street Drugs

Alcohol and street drug abuse is a growing problem amongst people with schizophrenia. In addition to the negative effects of substance abuse experienced by the general population, people with schizophrenia who abuse alcohol and drugs tend to have more symptoms, a tendency towards more violent behaviour, lower compliance with antipsychotic medication, and a much higher relapse rate than non-substance abusers. People who abuse alcohol and/or drugs also tend to receive a poorer standard of psychiatric care. They tend to be the patients that nobody wants to treat – mainly because they are notoriously difficult to treat. Heavy alcohol consumption should be avoided by people with schizophrenia – although an odd social drink should not be problematic, unless even moderate drinking severely exacerbates the patient‘s symptoms.

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http://www.schizophrenia.com/sznews/archives/005286.html

21 Street drug use by schizophrenics is dangerous. Even marijuana can set off psychotic symptoms in an unpredictable way. Stronger drugs like PCP and amphetamines are like poison to a person with schizophrenia Hobbies and Interests When people are in the acute and chronic stages of schizophrenia, they may lose interest in the hobbies and interests that they previously enjoyed. Whilst this is understandable, and important part of rehabilitation is introducing a schizophrenic patient back to the normal aspects of everyday life. Creative hobbies, such as painting, drawing, jewelry making and writing have been seen to be particularly helpful for people with schizophrenia, as such activities help the patient to express negative thoughts and feelings.

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ADVICE FOR FAMILY AND FRIENDS When someone you love has schizophrenia, many questions and powerful emotions are expressed: blame, guilt, anger, worry, desperation and disbelief. Family and friends need support, information and advice – but instead they are often left to cope alone, and they may feel as though no one understands or even cares. Getting Help for a Loved One If someone thinks that a friend or a family member might be experiencing the symptoms of schizophrenia, they may find it hard to get help. This is often the case when the person they are concerned about doesn‘t realise that they are unwell, and therefore refuses to accept that they need help. This might be because the delusions the person are experiencing makes them think that their problems are caused by aliens, for example, or they may not accept that they have a problem at all. If the person who is ill poses no risk to themselves or others, and their health is not deteriorating to the point where they are neglecting themselves, it is reasonable to wait and then try repeatedly, but gently, to get them to see a doctor. Furthermore, it is important to try to avoid pressurising the person – and it is imperative not to try and trick them into seeing a psychiatrist, because then they will become suspicious of any other attempts to help them. However, if a loved one seems to be suicidal or their behaviour poses a threat to other people, and they still refuse to accept help, then it may be necessary for them to be committed to a psychiatric hospital for treatment. It is very difficult to have a person committed for treatment unless they pose a significant risk to themselves and others. In the United States, there are two kinds of commitment: emergency and long term. In many states, any person can initiate a petition for emergency commitment. The person initiating the petition asks a doctor to examine the unwell person – some states require two doctors. The examination may take place anywhere. An emergency commitment lasts for 72 hours in most states. What to Say to Someone Who is Deluded or Hallucinating It is important not to minimise or dismiss such symptoms, or try to argue the person out of them by pointing out the illogicality of what they are saying. It is best to respect what the person is saying or experiencing, without colluding with it: for example, “I understand that you believe that people are talking about you and that someone is plotting against you. That must be very frightening for you, and I can understand and sympathise, although we must agree to differ about whether it is true.”

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How to Help Someone With Schizophrenia Stay Well Encouraging Them to Take Medication

The chances of schizophrenia getting worse, or a relapse occurring, are more than halves in most cases if the sufferer continues to take long term medication. Their family and friends may be in the best position to make sure the person actually takes their medication, especially since side effects might put the sufferer off taking his or her medication. Remember that there are things that can be done to relieve side-effects without stopping drug treatment. Stopping medication may well cause a relapse. Avoiding Criticism and Over-Involvement

People with schizophrenia often need space and time alone, and may find it difficult to play a full role in family life. Criticizing them for ―laziness‖, or trying too hard to get them to take part, might put them under pressure and increase their risk of relapse. It is also best to avoid too much ―expressed emotion‖, including not just critical comments, but also over-protectiveness and ―smothering‖, and expectations of frequent physical contact should be lowered.

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SCHIZOPHRENIA: A VIEW FROM THE INSIDE It began when I believed people knew what I was thinking. When I had a train of thought - I heard the person who I was with talk to me about my thoughts in my head. So I began to think it was some kind of telepathy. Moreover what made me certain it was telepathy was the voice I was hearing was that of the one whom I was with. If there was silence, I would be thinking – I would be alone – and my thoughts were disturbed by an independent voice who would talk to me in my head about what I was thinking – so I actually tried not to think as I didn‘t want the voices to know what I was thinking about, usually because the voices would say degrading things that hurt me. I felt as though I had no privacy whatsoever. One knows the privacy of thought in one‘s mind is very important as one may think something horrible about someone else and it is something you want to keep private – and I believed I was exposed and it was a terrible feeling. This lead to a mental deterioration which is known as thought disorder. When I was around people, I believed they knew everything I thought, as they could hear my thoughts. The thought disorder continued and then I began to see shadows on the walls doing things, for example ―someone on the computer‖ or ―people having sex‖. If I looked at the shadows and thought anything referring to them, they would respond to my thinking with hand movements I understood and sometimes a voice in my head which was their voice. Mostly I heard male voices, and because I really believed they were real, I felt insecure. I was never aware who the shadows on the walls were, as they were just shadows, but I did imagine who they would be. I then began to believe that all my family and friends could see what I was doing – as I thought they may be shadows to me, but I may be in full view and colour to them, and on top of that they knew all my thoughts, good and bad, so I pleaded with the shadows to give me the same vision as everyone else. Left untreated for two years, I felt isolated and lonely, because I couldn‘t talk to anyone about it, as I was too embarrassed. I believed I had an alternate reality and did not have a problem, as my eyes would not be deceiving me, as what I could see I believed was really there, and because the voices were so independent of my thoughts and talked to me personally, they were there too. The voices then began to get meaner, they would say that I was a whore all the time and when I was thinking about something, they would say I have no knowledge of it, and if I was thinking about my boyfriend at the time, who is now my husband, they would tell me he was cheating on me, and before I went to sleep, I would see shadows of two people having sex on the wall, which was supposedly meant to be him. I cried myself to sleep many times, having experienced this.

25 My hallucinations got stronger. I sat in my room most of the time isolated from reality and my family, as I just could not face them. After a while the shadows on the walls, which I believed were all the people I knew, began throwing rats at me. Many nights as I went to sleep, I could feel rats running through my body, as if it was hollow. I questioned why all the people in my life, knew what I was going through and why no one was helping me and feeling a lot of resent towards everyone, especially my mum and dad. My mother did not understand what I was going through, so she kicked me out of home. I had no place to go except my grandmother‘s house. I began seeing shadows in the sky as well, from what appeared as bubbles at first became shadows of people doing things. I saw them mostly when I was driving yes in reflection was very dangerous. I recall once on my way somewhere one of the larger shadows began talking to me and telling me to ―turn back‖. They were trying to control me always telling me that I had a ―yes‘ and ‗no‖ head, and trying to confuse me. Sometimes I fought it. I knew they were controlling me, all I wanted was to be free and have my own thoughts again without interference from this dark force. Something I thought about that was quite funny looking back to these experiences was how many times the shadows gave me the ―middle finger‖, (stuck up their middle finger at me). I have noticed upon doing some of my own research that my story does have similarities to others who suffer with this illness. That is why I still question today how that is possible. But I guess it just is. I was finally admitted to hospital after the cat team came to see me, I refused to talk and locked myself up in my room and wouldn‘t come out. It must have been very obvious that I had a problem. The police were called, but I still wasn‘t going to go! The cat team had to call in other professionals and they held me down and gave me an injection which calmed me down. The first time I was admitted to a psychiatric ward as an involuntary patient was for eight months and the whole time I was there, I denied I had a problem and continued to tell doctors and social workers that I had no idea why I had been admitted. I was pregnant at the time and the doctors put me on haloperidol, which is one of the worst medications for side effects but the only safe medication for pregnant women. It made me feel like a zombie, very robotic, made me dribble and made me eat double. One of my friends had been released from hospital and came back to visit, and all the inpatients were interested on how he actually got out. The answer was that he admitted he thought he had a problem. I guess there was more to it than that. But for the last few months I was in the hospital I tried it, still without telling them anything I had experienced. A short time after I got out of hospital I stopped taking the haloperidol- as I hated it. Well the problem was still unsolved. I still believed there were people watching my every move. I gave birth to my son and he was two weeks old when I was admitted to hospital again this time in the mother-baby unit. I was talking to one of the mothers in the ward and she was telling me how the doctors kept probing her about whether she hears voices,

26 ―they think I have schizophrenia‖ she said. Not ever having heard about what the illness involved I became interested. I wanted to hear more about it, and I told her that I did hear voices. I believe she must have become afraid and told the doctors immediately. For the first time I could relate to something that somebody said. When I saw the psychiatrist that day I finally admitted to hearing voices and seeing things. He diagnosed me with schizophrenia and put me on the medication Solion 400, in which I still take to this day. It took me a long time until I fully accepted that I had schizophrenia. It was only when I believed and accepted that I had schizophrenia that I had the power to change for the better. The anti-psychotic medication combined with the realisation that if I did hear a voice or see a shadow it was only a hallucination. It wasn‘t real. I have been stable for six years and know that I have to keep taking my medication for life if I want to keep my mental health. I definitely would not risk losing my beautiful son. If there are any signs of psychosis now or in future I will see my doctor. I am fully aware I have schizophrenia and have researched it and understood it. I believe people with schizophrenia should always be open about their symptoms even if they are out of this world, but one thing to remember is to always take the medication. Moreover to understand it is a mental illness and psychosis is not real.

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SCHIZOPHRENIA: A PSYCHIATRIST‟S VIEW Dr Robert Arul has been a psychiatrist for over 20 years, and has treated many people with schizophrenia. What is your best description of schizophrenia? It's a chemical imbalance of the brain which causes loss of connection between the emotions, the thoughts, mood and behavior. Many people think that schizophrenia is split or multiple personalities but it‘s not that it is a loss of connection. What is your advice to how family and friends can understand it? Reading up about it, the internet is a good source it's simple and has good explanations. Part of the treatment these days is for the family to speak with the treating doctors. What they have found is that if the family doesn't understand schizophrenia they can become very intolerant towards the patient and make the patient more stressed out. They could treat them like a child and do everything for them and become irritable. The main thing is that the patient is not responsible it is the illness that is responsible. So you should still treat them with respect. What are some signs and symptoms of schizophrenia and how do you diagnose it? Schizophrenia is diagnosed after 6 months of symptoms. There are positive and negative symptoms. Positive symptoms hearing voices, hallucinations, hearing voices and seeing things that aren't there, delusion and false beliefs, and also problems with their thinking-their thoughts are all disorganized, their emotions are not connected e.g.: they can giggle when they are talking about sad things. Negative symptoms is when you lack concentration, lack energy and lack motivation, and you may feel depressed. A deterioration in functioning for example it normally it starts from 16 to 17, so from a high level of functioning where they are able to look after themselves, study and function, it comes to a point where they can't do anything for themselves, they may be scared or maybe stuck in their room. What is the cause of schizophrenia? The cause of schizophrenia is not known specifically. It can start from child birth when the mother is pregnant she may have an infection. Or the time of delivery if the baby has a lack of oxygen, or head injury, or trauma, or it could be associated with a head injury later on in life, or drug abuse like marijuana, amphetamine, or it can be genetic. If one parent has schizophrenia there is a one percent chance they will pass it on. What is happening in the brain when an ill person is suffering a hallucination?

28 There is a part of the brain that is called the temporal lobe. It is the part of the brain that deals with hearing and sensations. There is a chemical imbalance of dopamine and serotonin, because the temporal lobe is not working, so one thinks that those actual voices are really there when they aren't there and they lose touch with reality. Can this be diagnosed through cat scans? No but they can be diagnosed through PET scan. Positron emission tomography (PET) scan that one can detect illness through colors and imaging.

The PET image above on the left indicates abnormality in the brain function which is called ―abnormal metabolic activity‖. Red Area = Increased brain activity. Blue area = Decreased activity. The PET image on the right represents all the corresponding regions of the brain show normal activity (yellow). What should family members and friends do if they suspect that someone is suffering schizophrenia? How should they respond and who should they call? The current studies have shown that the earlier you treat the illness the better the prognosis. They should take them to a clinic or psychiatric hospital, as the center will provide a multi discipline approach the ill person shall be seen by a doctor, social worker and psychologist so they can look at various aspects of the illness, e.g.: the doctor can subscribe the medication. They are assessed then the issue is whether they can be treated in the community or as an inpatient. What is your advice if someone believes they don't have schizophrenia, and they are refusing the medication? My advice is trying to talk to them about their illness and why they need to take their medication. And then of course if depends if they are a risk, suicidal, homicidal, if they are a risk to themselves they may have to be certified. My approach is to always look at it in an understanding way because if you try to use a heavy hand you may lose the person

29 or they may run away, they may feel threatened. The family is very important like working through the family. Studies indicate there are certain similarities in sufferers hallucinations such as "seeing shadows and "hearing voices", why? Hallucinations can come from experiences they have had in their past, and the environment around them. For example if someone is interested in computers, they can think that the computer is controlling their mind or their thoughts, they can feel that the computer could read their mind. Earlier on it was about radio and television and now days it is becoming more sophisticated like "satellites" and "spaceships" for example. What are the newest advancements in medications and is the new treatment working? The latest one is called atypical anti psychotics that work through dopamine and serotonin, but the advantage of atypical anti psychotic is that they don't cause so much sleepiness and weight gain and they also don't cause the Parkinson symptoms which is when people are stiff and walk like robots and also the sexual side of it as now you can select atypical anti psychotics which don't cause problems with the ladies like loss of period, or loss of libido and also weight gain. What are the long term side effects of older anti psychotic medication? Long term side effects have been detected in certain medication. One long term side effect is tardive dyskinesia, which is abnormal movements of the legs, hands and mouth. Sexual side effects such as impotence, light libido and weight gain. All these things you can Google on the internet. There are other long term side effects especially with Olanzapine of metabolic syndrome where you put on weight, it increases your blood sugar, diabetes and high cholesterol. You tailor make a decision on medication based on the patient, you must talk to the patient about what they do not like as they can offer become incompliant because they don't like a particular aspect of sedation, putting on weight, sexual side effects and try to work out what is troubling them. If one is taking Olanzapine it is recommended that one goes to gym and does a lot of exercise and to eat less, one must combat the weight problem. Do you know of any alternative practices to controlling schizophrenia? The medication is the main way. But now with the medication you can see psychologists and have cognitive behavioral therapy where they can be questioning the delusions as in " is it really real" , "is it really possible", "how can I control it", and say that you will stop letting it affect you but because it is a chemical imbalance you do need the medication. Both together. Also family therapy like working together with the family and making them understand. So it's very important, family therapy, psychology, occupational therapy and social therapy. Occupational therapy is where you assess what

30 sort of work they can do. Just because you have schizophrenia doesn't mean you can't do anything. Look at your level of functioning and what your skills are. "Shine" is a movie where this guy had schizophrenia but he could play the guitar very well. Or "A beautiful Mind" where he could still be a scientist I mean not everybody could be, but there are certain things that you can do. Vincent Van Gogh his paintings are still very popular although he did have an illness. Why do you think that some sufferers of schizophrenia believe that have a special gift? I believe it is part of a delusion. They feel powerful like they want to control the world. Maybe it's their way of coping with the illness. In every case is schizophrenia a life-long illness? A small percentage may be drug induced psychosis. Psychosis is caused by the drugs. In that small percentage 5 or 10 percent if they stop taking the drugs the illness will subside. That is sometimes why when they are acutely unwell you put them in hospital without any anti psychotics and see whether their symptoms improve after about a week or two but if they continue then it's more likely that it's schizophrenia. You can not cure it but you can control it.

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SCHIZOPHRENIA: A PERSONAL AND PROFESSIONAL PERSPECTIVE Frederick J. Frese III was diagnosed with schizophrenia at age 25, is now a psychologist who works with persons who have been hospitalized with mental illness. He frequently delivers presentations about coping with schizophrenia. His ideas are based on his personal experience of living with the disorder, as well as his experience with his patients. As a psychologist with schizophrenia, you must have an interesting perspective on schizophrenic illness. I know a lot about mental illness—both personally and professionally—and the two parts of my life are closely intertwined. The personal aspect is that I‘m a person with schizophrenia. This part of my life started officially in 1966, when I was twenty-five years old. It was during my fourth year in the U.S. Marine Corps, and I was a guard officer at a naval air station in Florida. I provided security for the installation, which included a large storage area for nuclear weapons. By this point in the mid-1960s, the war in Vietnam was beginning to intensify. I became curious why the U.S. wasn‘t winning easily, as we believed we had great superiority, particularly in weapons. After wondering about this puzzling situation for several months, I made what I perceived to be an extremely important discovery: our Asian enemies must, somehow, have developed a powerful psychological weapon that enabled them to brainwash America‘s high-ranking officials, including military officers. This, to me, was a fantastic breakthrough, a realization that accounted for our difficulties in Vietnam—as well as some difficulties I was having with my senior officers. Because, in my mind, I‘d made a discovery of critical importance for our nation‘s war effort, I felt compelled to share my discovery with the person I thought should know the most about brainwashing: the base psychiatrist. When I contacted him, he agreed to see me right away. As our brief talk concluded, much to my surprise, two men in white coats began to escort me into the seclusion room of the base‘s psychiatric ward. A short time later, I found that I‘d been diagnosed with paranoid schizophrenia. This event marked the beginning for me of a rather interesting lifetime journey. After my initial diagnosis, I spent most of the next five months as a psychiatric patient on the sixteenth floor of the U.S. Naval Hospital in Bethesda, Maryland. There I was given a recently introduced wonder drug called Thorazine. After a few weeks, the importance of my "delusion" about the enemy having special influence over the powers that be in this country gradually diminished, and I became less preoccupied with "my discovery."

32 I was discharged from Bethesda Naval Hospital in remission; I don‘t remember being told to continue taking Thorazine (but this could be faulty memory on my part). I told no one about my schizophrenia. I was able to function well, completing a graduate program in international business, and I got a job as a management trainee in a Fortune 500 company that manufactured heavy construction equipment. Before long, my schizophrenia emerged again—it‘s a chronic condition, and episodes tend to occur from time to time. The company was doing increasing business with Japanese customers, and as I‘d learned a little of the language during military tours in Japan, I was invited to a dinner with some Japanese visitors. I tried out my awkward Japanese in conversation, but I understood little that was said to me. I knew, however, that people in Japan, and in East Asia generally, tend to be superstitious about the number "four." In Japanese, the word for "four" is shi; it also means "death." East Asians tend to see the number four much as we Westerners view the number thirteen. I didn‘t want to offend the Japanese visitors, so I made an effort to avoid the number four. In the process, I managed to say the number "three" quite a bit. The Japanese businessmen seemed to appreciate that I was showing respect for their customs. I quickly became the preferred person to host Japanese visitors, quite an honor for a recently hired management trainee. In my mind, I was receiving this positive attention because I was giving deference to the mystical values of the Orient. It was as though I‘d stumbled onto a numeric key for communicating with the people of the East. Then I began to think, don‘t we Westerners also have an affinity for the number three? I could look out the window and see a plethora of church steeples, all honoring a holy "trinity." And, isn‘t our government divided into three sectors—the legislative, the executive, and the judicial, or maybe the federal, state, and local? Isn‘t the U.S. flag the red, white, and blue? Isn‘t traffic controlled by red, yellow, and green lights? Don‘t we get our news from ABC, CBS, NBC—all of which are combinations of three letters? My mind began to focus on the number three and its possibilities for connecting the values of the East and the West. Clearly I was on to something of immense consequence. It was a Sunday morning, and I decided I‘d go to church at the biggest "temple to the trinity" in the city I was visiting, Mil-wau-kee, Wis-con-sin. This, I learned, would likely be the church at Marquette University, on the corner of Wis-con-sin Av-e-nue and Twelfth Street. The hotel was on Seventh and Wis-con-sin, so I started walking up the avenue toward the church. I was so focused on my newfound realization of the importance of the number three that I‘d stop when the traffic lights turned red, even though I wasn‘t at the corner. Despite my interrupted pace, eventually I made it to the church, where the service had already begun. Initially I sat quietly in a pew near the back, appreciating my newfound awareness of the value and power of the number three. Then I rose and began walking up the aisle toward the priest. At this point, I felt as though some external force had taken control of

33 my movements. I was much less in control than I‘d been when I was walking toward the church. Not long after reaching the priest, in my mind, I began to devolve back through evolution. I became like some kind of monkey, then a barking dog or werewolf. Next I turned into a snake, then a one-celled animal. Eventually I felt myself becoming just an atom. In my mind, it was a tritium atom, the isotope of hydrogen with three times hydrogen‘s ordinary mass. Indeed, tritium is the hydrogen isotope that‘s split to set off a nuclear explosion. Somehow I‘d become the instrument to be used to set off the earth‘s final nuclear holocaust. I felt myself being put into a large airplane (later I was to understand it had been an ambulance) that was to drop me over Moscow and begin the earth‘s nuclear annihilation. When I woke, I was strapped down to a bed in Milwaukee‘s public psychiatric hospital. For a short while I believed that I was in some heavenly place and that the world had been destroyed. Before long, the staff must have thought I‘d improved, because I found myself discharged into the cold Milwaukee streets. And, very soon, I found that I no longer had a job, and I had nowhere to go. I spent the next decade periodically experiencing other delusions and bouncing in and out of various military, county, state, private, and veterans‘ hospitals—mostly involuntarily—in several states. At one point, in Ohio, I was picked up by the police and taken to the Columbus State Hospital, then brought to court. During the hearing, I was apprised by the testifying psychiatrist that my schizophrenia was a degenerative brain disease and that it would become worse with age. I was also told that, in all probability, I would be spending the rest of my life under the care of the state hospital system. I was then judicially declared to be an insane person under the laws of Ohio. Despite the dismal forecasts from professionals about my future, I was eventually discharged. How did you come to work in mental health? Did you tell people that you had schizophrenia? I was amazed that I was able to find work shortly after leaving the hospital. I got the job in part because a friend was able to pull strings for me, in part because I‘d happened to major in psychology in college, and despite having checked "yes" in answer to the question on the application form, "Have you ever been committed?" This is when my role as a professional in the world of mental illness began. My new position at a large state prison consisted of administering psychological tests and writing pre-parole personality evaluations for inmates. My new boss, a well-known psychologist, quickly advised me not to reveal to anyone that I was under treatment for schizophrenia. I decided to carefully comply with his "suggestion."

34 Indeed, I kept my condition a secret during the entire three-year period I worked in the prison. Later, while attending graduate school in psychology at nearby Ohio University, I continued to keep the secret. Amazingly, I was somehow able to do this, even though I experienced two additional psychiatric hospitalizations during my five years as a graduate student. After graduating with a doctorate in psychology, I returned to employment with the state government. This time my job was to perform various psychological and administrative duties at Ohio‘s largest psychiatric hospital, located in the Cleveland/Akron area. I quietly apprised my new superiors about my having schizophrenia. Again, I was very strongly advised not to reveal anything about this to others. A few years after starting at this facility, I was promoted to become the hospital‘s director of psychology, a job I was able to hang onto for the next fifteen years, despite experiencing several breakdowns. (Many of us with the two "functional psychotic disorders"—schizophrenia and bipolar disorder—are subject to periodic relapses.) It was about midway through my tenure in this position that I began considering the possibility that one reason schizophrenia was thought to be a condition from which people didn‘t recover might be because those of us who do recover don‘t tell anyone about it. I wasn‘t sure how many others like me there might be. Initially I kept these thoughts to myself. But one day in the mid-1980s I was part of a panel at nearby Kent State University addressing a graduate class in psychiatric rehabilitation. When it came time for me to speak, I was standing, probably behind a lectern. Much to my surprise, and for some reason I still don‘t fully understand, I began my presentation to the class by saying something like, "I‘d like to find out how much you already know about serious mental illness. If there‘s anyone in this class who‘s ever become so psychotically delusional that you‘ve been picked up in the street by the police, taken to a state psychiatric hospital, and declared by a judge to be insane, would you please stand up and identify yourself?" Of course, no one stood up. I proceeded, in dramatic fashion, "Well, I guess I‘m the only one in the room standing." My remark was met with deafening silence—it was quiet as outer space must be. No one in the class made a move. Everyone seemed astonished. But no one was as astonished as I was at what I‘d just done. And I had no idea what the consequences of my outrageously imprudent act might be. It‟s twenty years since you made your „secret‟ public. What‟s happened since then, and do you think people should be more open about having schizophrenia?

35 Since then I‘ve delivered more than a thousand presentations about my recovery from schizophrenia, in virtually every state in the U.S. and in several foreign countries. I refuse to hide in the shadows and be ashamed. People with mental illnesses, as a group, must no longer be ashamed of who we are. Although being open about having these conditions is still a problem for people with their careers before them, those of us who are far enough along in our careers—and, therefore, can afford to take the risk of revealing—must no longer hide in the shadows, trying to blend in, pretending that we are not who we are. We must stand up, identify ourselves, and be proud that we have been able to overcome what has been characterized as one of the most devastating of all disabilities. This act of self-identification is especially important for mental health professionals; too often they are willing to perpetuate negative views by concealing their conditions. A number of us did precisely this type of self-identification in the March 2009 issue of Schizophrenia Bulletin. Our article—written by psychologists, psychiatrists, and other mental health professionals with doctorates who are in recovery from schizophrenia— recounted our varying perspectives on our recovery journeys. When we see, hear, or read of ourselves being referred to with pejorative, exclusionary terms ("crazies," "schizos," "nut cases"), we should take issue with the terms. And particularly so when we are disrespected in this manner by mental health professionals. These professionals should be actively working with us for our recovery and for us to be fully included in every aspect of society; they must begin to become advocates for our inclusion as equals in society. You‟re a psychologist – can you explain how people with schizophrenia can be helped by psychotherapy? The psychologist can provide therapeutic services for the person with schizophrenia, including support and help in communicating any problems with their medications. A significant role for the psychologist is dealing with denial of the disorder. Because denial is based on the instinct for self-protection, it can be a very strong obstacle to successful treatment. The psychologist tries to overcome the need for denial by working with the person to identify and reduce the anxiety associated with having schizophrenia. This involves coming to understand the meaning of the disorder for the person who has it, dealing with the real losses they experience because of the disorder, and addressing their expectations for the future. In addition, the psychologist works to strengthen the person's sense of selfappreciation and empowerment in order to counter the negative impact of the disorder on his self-image. Part of this work also involves developing the person's ability to respond to the stigma of schizophrenia -- to respond in constructive ways to negative biases they might encounter with other people.

36 In addition to directly helping the person with schizophrenia, the psychologist can provide support for family members. The role of the family member can be very stressful, emotionally painful, and often thankless. In particular, family members can be central figures in delusional beliefs and can suffer antagonism, harassment, or abuse as a result. Also, the family may be forced to take responsibility for the person's well-being during periods when they are too ill to care for themselves appropriately. This might include taking them to treatment against their will, and facing considerable anger and resentment for doing so. It also can mean pursuing civil commitment through the probate court in order to mandate treatment or hospitalization. The psychologist can help by providing a place where family members can express their feelings, their frustrations, and their questions. In addition, communities often have support groups that can be very worthwhile. From a personal perspective, I‘m positively certain that my own illness gives me a better understanding of people with schizophrenia – but that doesn‘t mean that other psychotherapists are less qualified to help schizophrenics! From your personal and professional experience, what advice can you give to people with schizophrenia, and their family and friends? Over the years, I have developed a talk that covers the 12 aspects of coping with schizophrenia. Firstly, there‟s denial and acceptance. I cannot tell you how hard it is for a person to accept the fact that he or she is schizophrenic. Since the time when we were very young we have all been conditioned to accept that if something is crazy or insane, it‘s worth to us is automatically dismissed. We live in a world that is held together by rational connections. That which is logical or reasonable is acceptable. That which is not reasonable is not acceptable. The nature of this disorder is that it affects the chemistry that controls your cognitive processes. It affects your belief system. It fools you into believing that what you are thinking or what you believe is true and correct, when others can usually tell that you thinking processes are not functioning well. I had been hospitalized five times before I was willing to consider the possibility that there might be something wrong with me. Psychosis is a "catch 22." If you understand that you are insane, then you are thinking properly and are therefore not insane. You can only be psychotic if in fact you believe you are not. Therefore, almost everyone with this disorder initially denies that they have it. Some deny it all their lives. Most of the 300 patients I had in the hospital where I worked will tell you that they are not mentally ill. Denial of the disorder comes a part of the territory for most of us who have it. Some of those who have the disorder not only deny that they have it, but they also deny that it exists. But if one does not acknowledge that they have the disorder, how can it be helped? Why would anyone want to be cured of a disorder that they do not believe they have? I find that a good approach for persons in such denial is to point out that, even though they may not have the disorder, it is true that they have been treated by others as though they do have mental illness. They will usually agree with this, especially if they have been hospitalized.

37 Often these folks will accept being referred to with a term like "survivor." Once they have accepted the fact that others may view them as mentally ill, they then have some motivation to learn more about the disorder. It is generally best not to make a "frontal assault" against denial. Try to establish a trusting relationship and gradually chip away or "defreeze" the rigid cognitive defensive structure that constitutes the denial. Secondly, knowledge of the disorder. From the viewpoint of the person with the disorder, the phenomenon can be very much like a mystical experience. The young psychiatrist, Carol North (1987), describes herself as being in a parallel reality or at a cosmic juncture. I (Frese, 1993 a) have referred to one of my breakdowns as "cruising the cosmos." David Zelt (1981) describes himself as being "constantly in touch with the infinite and the eternal." The nature of the disorder is that it affects the brain's thought and belief systems, it affects a person's confidence in what is truthful. Therefore, to the person who is experiencing the disorder it very much can be a mystical journey where poetic relationships and metaphorical associations dictate truth. To the person who is experiencing the disorder, these subjective experiences are very real indeed. Therefore, while one should try to understand as much as possible about how the disorder is accompanied by biochemical irregularities, one should also understand that for the person who has the schizophrenia, it indeed can be a mystical or even religious experience. Thirdly, medications. Persons with serious mental illness are disabled, just like people who are blind, deaf, or crippled. Like others who are disabled, we can be helped by artificial support. Where a blind person may have a cane or a Seeing Eye dog, the deaf may be helped by a hearing aid, and the crippled may be helped with a wheelchair or a crutch, we too can be helped by artificial means. Because our disability is one of a biochemical imbalance, it is reasonable that our "crutch" is chemical. For us, our crutch is the neuroleptic medications that we take. In order to keep our brain's neuro-chemical processes properly balanced, we need the assistance of helpful chemicals, prescribed medications. Certainly, without having such medications available, I would not be able to function as I do today. True, there are side effects of these drugs: Akathisia, akinesia, dyskinesia, dystonia, etcetera, and these can be quite problematic, even disabling. But medications are becoming better. Around the country I have met dozens of persons who have been helped by clozapine, which has only been widely available in this country for a relatively short time. Other drugs such as Risperidone, Roxiam, and Olazapine hold out further hope for those of us who are disabled with mental illness. Those of us who are dependent on these drugs should attempt to learn all we can about them and their side effects, both short and long term. These medications hold such hope for us. But just as some chemicals function to assist us, others are harmful to us. Such "street drugs" as PCP and amphetamines are much more likely to cause a recovered schizophrenic to relapse into psychosis than they are to have a similar effect on a "normal" individual. Likewise, marijuana and alcohol also increase the likelihood that persons with these vulnerabilities are going to experience mental breakdowns. Those of us with these vulnerabilities to breakdown in our biochemical systems need to learn as much as

38 possible about the effects of drugs so that we can utilize or avoid them in a judicious manner. Fourthly, delusional thinking. When a healthy individual functions in a normal manner, encountering moderate degrees of stress and pressure, his or her physiological systems operate in a healthy manner. But when stress increases and is sustained, physiological systems begin to wear and weaken. Eventually they malfunction. They break. Different individuals react in different ways. Some people react more with blood pressure increases, others more readily react with sweaty palms. Still others react with increased gastro-motility, their stomach "churn." Psychophysiologists refer to this as "response specificity" and point out that people tend to develop symptoms in the physiological systems in which they are most reactive (Sternbach, 1966). From this perspective it is not unreasonable to view some of us a neurotransmitter reactors. When we are functioning in a normal manner, we are rational, but we tend to overreact to stress with our emotions and our cognitions/ Ordinarily we reason as others do. Our mechanisms for processing information in a logical, rational manner are intact. We are said to use linear logic and Aristotelian reasoning. When our systems encounter pressures, our physiological/mental processes react as a defense. Our mental processes react in such a manner as to defend against the stressors. We may become more vigilant, more suspicious. Out thinking may speed up, our minds may begin to race. We may start developing new, more original way of thinking about things. Our coping mechanisms begin to strain. At some point our minds begin to break. At first they just crack a little. They craze. Then we begin to "go crazy." We lose our ability to remain rational. Instead our minds revert to an evolutionarily earlier way of functioning. Fifthly, social deficits. Schizophrenics tend not to look at the person to whom we are talking. From our perspective there is good reason for this, of course. We are more easily distracted and if we look at others while we are talking we will see their facial reactions, making it more difficult to focus on what we are saying. This naturally can be most disconcerting to the person with whom we are conversing. Normals expect signs of interaction when they are speaking with others. Since we often fail to respond in the expected manner, we throw them off. Schizophrenics are much less likely than normals to nod in agreement or move our hands in rhythm with our partner's speech. Often when we do nod appropriately it will be later in the course of talking than is usually expected. The reason for such delaying is that we spend a longer time processing information than normals. Such delays of course tend to throw off the rhythms of a conversation. Normals find this disconcerting. They often do not realize that our failure to send and receive the expected cues during conversation is part of our disability. Schizophrenics' deficits in social communication skills interfere with their functioning in vocational settings. They point out that schizophrenics may perceive a joke as a threat, or otherwise misinterpret communications by co-workers and employers. Often person with schizophrenia can perform the work as well as normals, but due to their deficits in social and communication skills they have more difficulty in the work setting, sometimes to the point of even losing their employment. Clearly, those of us with schizophrenia need to know more about our deficits and those who frequently interact with us need to know

39 about our deficits in social interaction. Together we can work to better compensate for them. Sixthly, replaying/rehearsing. Often when you visit a psychiatric hospital you will see patients who seem to be talking to people who are not there. In their one-sided conversations they will often become quite animated. Because they are talking to people who are not there, it is usually assumed that they must be hearing voices and talking back to them. Although this may sometimes be the case, often something quite different is at play. Those of us with schizophrenia are very sensitive to having our feelings hurt. Insults, hostile criticism, and other forms of psychological assault would us deeply, and we bear scars from these attacks to a much greater degree than do our normal friends. Because we have this hypersensitivity, naturally enough we try to protect ourselves and prepare ourselves from possible future attacks. By way of this, one of the things we do is replay in our minds situations where we have been hurt, trying to develop strategies of response so that if we find ourselves in similar situations again we will not be so damaged again. What we are doing in our minds is saying to ourselves "What I should have said was…" or "I should have told that guy that I am just as good as he is." We rehearse or reply situations over and over in our minds, and we often find ourselves speaking in an audible fashion when we are doing this. We have a definite compulsion to engage in this sort of behavior. Persons with schizophrenia need to know that we have this tendency to talk to ourselves, and that this behavior tends to upset normals. I recommend that whenever we have a need to this that we do the same thing that we do when we have other physiologically based needs to function in a manner not welcome in polite social circumstances. We should excuse ourselves, withdraw to a restroom or other area where we can be in private, and rehearse/replay until we get the urge to do so out of our system. Despite this advice, I frequently find myself in social situations where I am talking to myself, usually in a soft tone. It is at times like these that I am most gratified that others know that I am disabled with schizophrenia. Because of this I think others expect me to be a little different. So when they see me talking to myself, they do not seem to be quite so perplexed. Seventhly, expressed emotion (EE). The EE concept was developed by George Brown and his associates in the Institute of Psychiatry in London in the 1950's (Brown, Carstairs, & Topping, 1958). Brown's studies focused on the relation between family variables and the likelihood of relapse on the part of persons with schizophrenia who had recently been released from the hospital. Those investigators found that patients who went to live with family members who were highly emotionally involved were much more likely to relapse than those patients who went to families who were less "hostile," or who exhibited less "expressed emotion." Furthermore, the relationship between emotional involvement and relapse was not related to the severity of symptoms at the time of discharge. High EE was defined as involving three factors. 1.) Statements of resentment, disapproval, or dislike, and any comments expressed with critical tone, pitch, rhythm, or intensity in their voice. 2.) Hostile remarks indicating personal criticism. 3.) Emotional over involvement, constant worrying about matters, overprotective attitudes, intrusive behavior. It is my experience that those of us with

40 schizophrenia are indeed very sensitive to hostile criticism and other forms of expressed emotion. But it is not only in the family context. Whenever persons with schizophrenia encounter criticism, insults, or other forms of psychological oppression, we tend to be damaged in a manner that increases the likelihood of our relapsing into psychosis. This vulnerability tends to be part of the disorder. Those who have this disorder need to know that they are vulnerable in this manner. Other persons who come into frequent contact with the mentally ill also need to know that we are particularly sensitive in this regard. Those of us with schizophrenia need to avoid the persons, places, and things where we are likely to encounter expressed emotion. But, of course, we will not always be able to avoid such circumstances. For those times when we are going to encounter hostile criticism, etc., I recommend that we be prepared to protect ourselves by developing a mechanism for communicating to others something about the nature of our disability. Some years ago I developed a card that I carry in my wallet. When I find myself being faced with unfair criticism I will present the person doing the criticizing with my card, which has these words written on it: Excuse me. I need to tell you that I am a person suffering from a mental disorder. When I am berated, belittled, insulted, or otherwise treated in an oppressive manner, I tend to become emotionally ill. Could I ask that you restate your concern in a manner that does not tend to disable me? Thank you for your consideration. While I don't use this card frequently, I do find that it gives me re-assurance to have it with me. Eighthly, stress and excitement. Not long ago three former patients at our hospital were the focus of a local TV news program on mental illness. All three performed very well for the program but unfortunately within three weeks each of them had relapsed and were back in the hospital. My own breakdowns frequently occur while I am attending conferences or shortly thereafter. I often find that a visit to a shopping mall where there is much stimulation causes me too much stress. Persons with schizophrenia should realize that they can become over stimulated by exciting circumstances as well as by stressful ones. We need to develop techniques to limit the effects that over stimulation may have on our systems. I find that when I begin to become over stimulated it is often helpful to withdraw to my room or if I am at a mall I can withdraw to a less stimulating environment. Ninthly, music and hobbies. Because the nature of our disability is such that our ability to sustain our rational processes is damaged, it is often helpful if we engage in activities that do not tax our logical abilities. Music, art, and poetic type endeavors are often easier for us to handle. For this reason I encourage persons disabled with schizophrenia to engage in these forms of expression as a way of communicating. Not long ago a patient of mine who engages frequently in writing poetry wrote a poem that I feel carried a particularly insightful message to mental health workers. She wrote: Be my teacher Not a preacher, And as I learn Give me a turn.

41 Tenthly, stigma/discrimination. Traditionally, those of us who were struck with mental illness were ejected from society and placed in isolated asylums. The words "crazy," "insane," and "nuts," have come to mean those things that can be immediately dismissed as unimportant by the members of the normal population. Until about forty years ago, those of us who were determined to be insane were removed and not expected to return to society. When we did start returning we were not generally welcomed. As I pointed out in a recent article (Frese, q993b), the movies have a tradition of portraying the mentally ill as monsters. The news media also primarily addresses mental illness when one of us has killed or has committed some other form of bizarre crime. While normals can speak openly and even casually about cancer or heart disease, the topic of schizophrenia elicits primarily emotional reactions like fear or derisive humor. Normals are not comfortable with the thought of a seriously mentally ill person living in their neighborhood, being in school with them, or being in their workplace. We still frighten them. They do not know what to expect from us. For those of us who have returned and have found that we are not as welcome as we would like to be, we have a challenge. We must work together to change the image we have with those in what I sometimes refer to as the "chronically normal" community. As more and more of us are becoming open about the nature of our disability, we have an obligation to share with others as much as we can about mental illness so that there is less fear and greater understanding and acceptance. To help counter the negative images, it is of course helpful to have positive images of the mentally ill to put forth. Eleventhly, revealing/covering. Since deciding to become open, and even public, about my condition, I have received quite a bit of media coverage. One consequence of this is that recovered mentally ill persons, including many professionals, who have not been open, contact me and ask if it is wise to share such information with others, particularly their employers. Some time ago I developed a strategy for approaching others such as employers. The consumer/employee takes an article about myself or another recovered person and shows it to the boss. If the boss' reaction is positive, saying something like "That person must be very brave and is probably making a real contribution," then you know it may be safe to share with him or her about your own background. If, on the other hand, the boss' reaction is more along the lines of "I'm sure glad we don't have a 'nut case' like that working here," then you might want to be a little more cautious. Interestingly enough, those who have tried this strategy in mental health settings have received both types of reactions. Those who receive a positive reaction generally follow up and reveal that they, too, are recovered persons. Usually this is a therapeutic relief for them. It is very difficult to carry a "shameful" secret with you. When we consumers meet at conventions and elsewhere I often hear statements like, "I am so tired of hiding, " from those who are not open to others about their condition. However, as a practical matter, many persons probably should not be too open about their past. The ADA affords some protection and even advantage to officially stating that you have a disability, but there is still much discrimination. If you decide not to reveal to others, how do you cover for the time you were in the hospital? If you are unemployed,

42 how do you answer when asked what you do for a living? Many consumers find these very difficult questions to handle. I advise you to respond by saying that you are a writer, an artist, a (mental health) consultant, or perhaps that you "freelance," depending on how you have been spending your time. None of these responses are lies, per se, but they leave considerable latitude for interpretation and they do not require that you have a specific employer or work location. Whether you decide to reveal or not is a serious personal decision. If you are older, established in a career, particularly in the mental health field, it is probably safer to become open about your condition. Obviously, the closer you are to retirement age, the better. But if you are younger, just starting out, you might want to be very careful about becoming too open about being a person with serious mental illness. One important thing to remember is that once you tell others about yourself, you cannot un-tell them. Once you become open, there will be insults, subtle and otherwise. If you decide to reveal, be prepared to do a lot of educating of our "chronically normal" friends. Finally, networking/consumer groups/self-help. Whenever I was released after being hospitalized, I always knew that there were others like me, those who had received psychiatric inpatient treatment and were now in the community. But I had no way of knowing who these people were. Everything was clouded in secrecy. There was no practical way for one to meet others who had similar experiences. As a result, being a recovering mentally ill person was a very lonely experience. As I did, too many discharged persons spend too much time alone in a room watching television or just looking at the walls. It has been my experience that recovering persons benefit greatly from associating with others with similar disabilities. In some areas consumers have taken the initiative to establish facilities for recovering persons that are operated by themselves. They may or may not work in concert with traditional mental health providers, but control of these operations remains in the hands of recovered persons themselves. These are usually referred to as self-help efforts and are generally found to be cost effective and much appreciated by the consumers who are involved with them. Indeed, recently when the Board of Directors of the NMHCA organization was asked to identify their highest priority as to restructuring the delivery of mental health in this country, the NMHCA Board members unanimously identified self-help as their major issue. With this kind of enthusiastic support, it is likely that self-help consumer run drop in centers, social clubs, and crisis facilities will become more widely available. Do you think it‟s possible for people to „overcome‟ schizophrenia, like John Nash in “A Beautiful Mind”? A century ago, Dr. Emil Kraepelin, the acknowledged "father of psychiatric nosology" and first to identify schizophrenia, was very dubious about the possibility of recovery from schizophrenia. His pessimism continues to be reflected by many today, e.g., George Will's Newsweek review of A Beautiful Mind (January 14, 2002, p. 68), which describes "something extremely rare -- remission from a disease that is almost always irreversibly degenerative."

43 Because Dr. Kraepelin was such a dominant figure in psychiatric diagnostics, his views continue to be influential. In this regard I often meet psychiatrists and other mental health professionals who hold that if you were diagnosed with schizophrenia and "recovered", then you must have been mis-diagnosed. Obviously this is a tautological perspective and for such professionals, recovery from schizophrenia, in their eyes, is obviously impossible. At the other extreme, psychiatrist Daniel Fisher, M.D., Ph.D., who has himself been diagnosed and hospitalized with schizophrenia claims that "it's possible to completely recover (Boston Globe, March 3, 2002, p. B1)." This is a view shared by several similarly experienced associates of Dr. Fisher as well as some other consumer/advocates who have been diagnosed with schizophrenia. My perspective on this issue is also based on my own experience of having been diagnosed and repeatedly hospitalized for schizophrenia as well as having worked with and/or visited with groups of consumers around this, and other countries, virtually hundreds of times during the past twenty years. My feeling on this issue is as follows. 1) Schizophrenia, like other forms of psychosis, is not an "all or none" condition. There are most certainly degrees of the disability. Today, most persons with this condition can improve. Many of us can show marked improvements. Generally, those with greater degrees of disability are not able to improve to the degree that they appear "normal" in all respects. Those of us with lesser degree of disability can appear remarkable improved, sometimes virtually indistinguishable from "normal." 2) Treatments are improving, particularly during the past twenty years. I now meet many more persons who tell me they have been diagnosed with schizophrenia or schizoaffective disorder, who evidence virtually no symptoms during the brief periods of social interaction I have with them. This is true much more today than it was a few years ago. 3) For those of us who currently appear to be less disabled with this disorder, and our numbers appear to be increasing, we probably carry greater vulnerability to being subject to symptoms than those who have never had the condition. We probably also show greater likelihood of showing "schizophrenia spectrum" (paranoid, schizoid, schizotypal, etc.) personality symptoms than others do. Schizophrenia can be overcome, to varying degrees. Better treatments, better understanding of the disorder, and, for many of us, the aging process itself, all seem to contribute to this process. If some persons with this condition desire to characterize themselves as "fully recovered" or even "cured," I congratulate them, but I do not feel we are far enough along yet for this to be a realistic goal for those with the more serious forms of this illness.

44

SCHIZOPHRENIA: A SOCIAL PERSPECTIVE Shaun M. Eack received his Ph.D. on November 4, 2008 from the School

of Social Work at the University of Pittsburgh. His primary research focus is on the development, implementation, and evaluation of psychosocial treatment methodologies for persons with schizophrenia. He also studies the biopsychosocial factors that contribute to recovery and psychosocial outcomes among this population, and how the elucidation of these factors can serve to aid novel treatment development efforts. He has authored several publications under the mentorship of the late Professor

Gerard E. Hogarty on the cognitive and behavioral effects of Cognitive Enhancement Therapy, a novel psychosocial treatment program for persons with schizophrenia. In addition, he has published papers on factors affecting various psychosocial outcomes among individuals with schizophrenia, particularly quality of life, as well as social work workforce development issues as they relate to serving individuals with schizophrenia. He is currently a recipient of an individual predoctoral fellowship from the National Institute of Mental Health that focuses on studying a novel domain of social cognition in schizophrenia and its implications for psychosocial treatment development. (This interview took place between Jonathan Singer and Shaun Eack for the Social Work Podcast)11

What is schizophrenia? That‘s a very good question to start on. It‘s, I mean, officially defined by the DSM. (The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR)) It‘s officially defined as a collection of symptoms, like all of the mental disorders that we work with in social work. It‘s really just a constellation of signs and symptoms. Now in schizophrenia there are symptoms that are very specific, it‘s a class of what‘s known as the psychotic disorders, which you know used to be these things were grouped into disorders of psychosis and disorders of neurosis, where neurosis had to do with depression, anxiety, and psychosis had to do with disorders that sort of represent kind of a break with reality, interpretation of stimuli that isn‘t there, or severe confusion and difficulty using language, and formal thought disorder. Schizophrenia is under that broad framework, it has some specific symptoms that people use to diagnose the disease,

45 I won‘t go over every single one of them, you know but the hallmark symptoms of schizophrenia really are what‘s known as the positive category of symptoms, the hallucinations and delusions. A hallucination is really sort of the brains interpretation of some sort of stimuli that isn‘t actually there in the external, sort of shared reality of everybody else. This is most frequently experienced by people hearing voices, there‘s many different types of voices you can hear in schizophrenia, sometimes they comment on each other, sometimes they comment on you, sometimes they tell you what to do, sometimes they are just passive and they don‘t really make sense, and so it‘s a broad array of voices people could possibly hear that could be indicative of someone having schizophrenia. There are also hallucinations associated with every other sensory modality, from sight to touch, but by far the most common are auditory hallucinations, second behind that are visual hallucinations. That‟s interesting because in the popular media, it‟s the visual hallucinations that seem to get all the play. Hollywood has a tendency to over dramatize what it‘s like to have schizophrenia, and paint a somewhat unreal picture of even what visual hallucinations might be like. So often times I think our patients report them being much less diffuse than sort of concrete picture of something doing something to you, like a person riding in on a horse, they‘re usually much more nebulous than that. Not to say that that‘s completely impossible or never happened. But it‟s certainly more compelling in a blockbuster moving to have somebody riding towards you on a horse. Yes, it does make for interesting story telling. Now you mentioned positive symptoms, I just want to say that when you say positive symptoms, does that mean it‟s something that‟s good? It does not mean good. As anyone who has experienced them will tell you, it does not mean that they‘re good. Now some people with schizophrenia have hallucinations that are less aversive and even they may come to depend on and enjoy, but for the most part people will agree that their hallucinations are at the very least annoying, at the most, very detrimental to their lives. Positive is just kind of a misnomer, and just refers to an excess in function. In this case, an excess in the brain responding to something that is not there. That‘s why they call it a positive symptom, because it represents more than what sort of you have normally. To contrast that, schizophrenia is not only marked by quote unquote positive symptoms, but also what‘s known as negative symptoms. We name things pretty simply in schizophrenia research, positive and negative, even though they may not make a whole lot of sense. As positive symptoms represent sort of an excess in sort of sensory function, negative symptoms represent some sort of inhibition or digress in function. These are usually characterized, I mean they can become very severe

46 in many cases, but they‘re usually characterized by symptoms sort of flat affect, so speaking with sort of very little affect in your voice, presenting with very little affect in your facial expressions, individuals it‘s called sort of affect of flatting or affective, blunting of affect, there‘s also a severe lack of motivation that‘s characteristic of what we call negative symptoms, there‘s also problems with poverty of speech, so not being able to produce language as fluently as other people, and you see this category as a little more easy to understand, than the positive symptoms, just in terms of its name. All of these represent really kind of a loss of function, whether it has to do with a lowering of speech, a lowering of affect, interpretation, or expression, and so on. So those are the positive and negative symptoms, are there any other characteristics of schizophrenia? Those are the big two, schizophrenia is a remarkably heterogeneous disorder. What do you mean when you say heterogeneous? No two people with schizophrenia look alike, and not just in appearance, I mean in their symptom presentation. The disorder is usually made up by a constellation of different symptoms, from positive to negative symptoms, there‘s also symptoms of disorganization, formal thought disorder, individuals can present with what‘s been termed as salad, which is essentially speaking and all of the words are coming out, they make no coherent sense and don‘t logically form sentences. I completely forgot to mention delusions of course, as an important positive symptom that you would want to know about when you are diagnosing schizophrenia. It‘s frequently associated with hallucinations people do have, and delusion are really sort of beliefs, often times of unusual nature and sort of extraordinary phenomenon that have little supporting evidence or really no supporting evidence in sort of everyday life and basic reality. Individuals believing that sort of aliens have come to them in their sleep and put some sort of transmitting device in their head that sends information to the FBI or the CIA would be an example of a paranoid delusion, for example. Delusions, most often are paranoid in nature, although not always, so individuals can also have delusions that they have extraordinary powers, sort all contrary evidence kind of suggests that they probably do not, and often times these delusions are associated with the voices, or other types of hallucinations these people are experiencing, and so they kind of work hand in hand. Some interesting work has been done to try to understand why people with schizophrenia develop delusions, and it turns out such individuals seem to be prone to kind of a gross misinterpretation of kind of anomalous experiences, experiences that don‘t make a lot of sense, and if you think about how you might react, just yourself, to the anomalous experience of hearing voices chatting in your head that are not your own, you would probably try to make an explanation of that, and kind of spin a story about that, and depending on what they‘re telling you, your story might be very strange, and even though everybody else would tell you that your story is wrong, you still hear these things in your head, and you want to explain them. You know it seems like a lot of times

47 delusions may in fact be sort of very related to the hallucinations these people experience as really a method to some degree to kind of cope with them and explain you know the sort of unexplainable and anomalous experiences. That‟s really interesting because I know this idea of hearing voices is something that can be confusing when social workers first start out because we all have chatter inside our head. Sure. So how do you distinguish chatter from something that‟s actually problematic? We all have kind of an internal dialogue that we keep with ourselves you know through the course of the day and you know mostly all the time. But we all kind of know it‘s us to some degree and people with schizophrenia, they think it‘s someone else often times and I think that‘s a pretty good beginning sing that there‘s a problem. Another sort kind of tell tale sign is, not only if you think maybe it‘s not you but it could be someone else, but if you kind of can‘t stop it. I mean most of us can have, we may not have complete volitional control over our sort of internal dialogue, but most of us could you know kind of put the brakes on it if we really needed to, and really divert our attention externally to whatever we need to focus on. Individuals with schizophrenia hear voices have a big problem trying to do that and it‘s probably a good sign that you‘re lapsing into probably an auditory hallucination rather than just talking to yourself. It‘s interesting, some of the neuro-imaging research that‘s been done in schizophrenia suggests that the same types of areas of the brain that quote unquote light up or become activated when we‘re talking to ourselves and processing auditory information, are also activated when these people are hearing voices. So you know they are not just responding to stimuli they‘ve made up, at a very basic biological and physical level they‘re hearing information, their brain is processing some type of auditory information, and so they can‘t just stop that alright, I mean it‘s a hardwired process to some degree. So if I was working with somebody with schizophrenia and they talked about you know hearing voices, then it would be important for me to clarify what exactly that meant. Because it could be that they‟re not hearing voices in the sort of psychotic sense. Yes. They could just be talking about the fact that they got a lot of stuff going on and they keep thinking about, what do I need to do today, you know, blah blah blah. You know it‘s definitely important to clarify, even if someone is hearing what you are

48 pretty sure to be an auditory hallucination, it‘s always good to clarify the nature of that because they have several, they have pretty good prognostic value, different types of auditory hallucinations. When you say prognostic value what do you mean? Ok, so depending on what people hear and the types of voice they‘re hearing, they‘ll tell you to some degree how well these people are going to be doing, and maybe even how well they might respond to some type of medicine in the future. So there are some types of, I only say that because there are some types of auditory hallucinations that we know are really particularly problematic and really tell you know kind if foretell a particularly problematic story that people with schizophrenia might experience, and these are what are known as quote unquote command hallucinations. A command hallucination is a hallucination that you have, an auditory hallucination that you have that is telling you to do something, it is giving you commands, it is telling you to do something, and often times that commands aren‘t good. And we know for these individuals, while very few people with schizophrenia are violent, for the individuals that hear command hallucinations, we know that their risk for doing something violent in nature, or doing something that you know really is uncharacteristic of the general population and the population of people with schizophrenia in general is much more elevated, than the people that hear just kind of a running commentary in their head or hear an occasional you know ―boo‖ in terms of a voice. We know that these people with command hallucinations have much more difficulty and are much more likely to have you know a severe course of the illness and problems with violent behavior in the future. Why should social workers be interested in understanding schizophrenia? And a related question, what‟s the role of the social worker in working with people with schizophrenia? Well, on a very practical level, if you‘re a social worker working in a community mental health center, these are who you‘ll be seeing. You‘ll be seeing people that are experiencing schizophrenia, that often times have been suffering from the illness for many years, and so social workers should care, if for no other reason, because these are the people that you will be helping and serving in a community mental health center. Now of course, social workers, I think, have a much more sort of noble purpose in working with people with schizophrenia beyond the fact that they‘ll be seeing them in treatment, and that‘s, if we talk about all the different types of people who have mental illness, and all the different mental illnesses that are out there, I think it‘s probably pretty safe to say that people with schizophrenia are most in need of an advocate, they‘re most in need of someone to help stand up for them, most in need of someone to support them, and they often times fall through the cracks in our systems. So we‘ll see many times, as of course is a stereotype associated with homelessness and being psychotic, or having schizophrenia or hearing voices, and so social workers with their knowledge, not only of mental health treatment and diagnosis, but at a broader more system level are

49 really in a very well equipped position to help people with schizophrenia in a number of different ways: By providing direct treatment, by advocating for better treatment, by advocating for better social services, by helping these individuals when they‘re being taken advantage of which happens very often, particularly you know people with schizophrenia receive a social, of course a disability payment, and often times people will try to take advantage of them to try to coerce them to give their disability payment to them or fork it over. Family members can do that on occasion, although often time family members are nothing but helpful when it turns into working with people with schizophrenia, they can be one of your greatest allies and resources, not only for the person that experiences the illness but also for the social worker that‘s really trying to help them. What are the other treatments that are out there for schizophrenia? I mean if we just have to divide them broadly, you know because there‘s a lot of them. They fall into two groups, one is a pharmacological approach, medicine, particularly anti-psychotic medication, so of which there‘s lots of different kinds of course, and then the other one, which is the one that social workers provide, not that they should not know anything about psychopharmacology, of course it‘s very important to know something about that, but the other type of treatment is psychosocial treatment, which ranges from therapy to family psychoeducation, which is as I am sure Carol explained kind of a misnomer, it‘s education about the illness, it‘s not sort of psychoeducation or whatever, there‘s also sort of more systemic models like sort of community treatment, which was a very interesting approach developed by a social worker, a psychosocial approach to help people with schizophrenia live outside of the hospital. Particularly the people that had been in state hospitals for many years, rather than making them stay in the hospital, it‘s let them live in the community and sort of bring the hospital to them, so they called it hospital without walls, which was a very effective approach, it‘s been disseminated in a number of places now. There are several individual therapeutic approaches, one that we‘ve been working on here at the University of Pittsburgh that focuses on improving cognitions in schizophrenia, and you know it‘s one of the symptoms that we didn‘t really talk about much, and it‘s a symptom that actually most people don‘t talk about much when they think of schizophrenia. I highlighted the two biggies, the positive and the negative symptoms, but we‘ve recently turned our attention to these cognitive symptoms, and I‘ve been trying to develop treatments for them for a number of reasons. Perhaps the most important, is even if we completely reduce or remove a person‘s positive symptoms, hallucinations and delusions, which antipsychotic medications can be very effective at doing, many individuals with schizophrenia still experience great disability, and which was I think to some degree puzzling to people some years ago, that really kind of the hallmark of psychosis would be remitted, but these individuals would still have difficulty getting a job and maintaining friends, and sort of building the quality of life that most of us would consider to be even minimally sufficient. Some people started looking at the various aspects of schizophrenia and discovered that the disease really was characterized kind of by a core deficit in

50 thinking, in cognition, that really kind of fell across two different domains, and that really helped us understand why these individuals are continuing to have difficulty and struggling in life, even after positive symptoms have gone away. And the two dimension of cognitive problems that people with schizophrenia tend to experience are, one area is called neuro-cognition, which is kind of the area of cognition that you think about when you think about thinking problems in general, problems with attention, problems with memory, problems with the quote unquote executive functions, which is really being able to solve problems, and so these are all kind of basic neuro-cognitive processes that people need to get on with their everyday life, to remember a phone number, to pay attention to a conversation, so on and so forth. And so it turns out that that‘s a big problem in schizophrenia, people with schizophrenia perform on average two standard deviations below the mean of healthy individuals, right so that‘s very poorly, and this has nothing to do with their intellect, it‘s not to say that people with schizophrenia are not smart, many of them have above average IQ‘s, these have to do with basic cognitive processes that you need to get on with your daily life, and that you need to put one foot in front of the other, and be able to make sense of the world and engage in complex problem-solving and information processing. So you‟re suggesting that if somebody with schizophrenia is walking down the street and somebody says “Hey how are you doing?” and they have a hard time responding, it might not be because they‟re actively hallucinating or they have paranoid delusions, or something else, you‟re suggesting that there is some cognitive deficits going on that are separate from these other cluster of symptoms that we‟ve been talking about that might prevent them from interacting or engaging with someone on the street? Absolutely, so that‘s not to say that auditory hallucinations will not keep you from engaging with people on the street, I mean those are certainly big barriers, but when we get those taken care of or largely under control, you‘ll still see problems. And people with schizophrenia will still tell you, ―I‘m still having trouble sort of concentrating and focusing, and remembering what I‘m supposed to do everyday‖ and what not. So there is a basic core deficit in cognition in schizophrenia, one is this domain of neuro-cognition, there is another domain that‘s very recently become a major area of study in schizophrenia research, called social cognition, and these are the kind of things that you do or think about to be able to act wisely in social situations, they‘re the kind of mental processes that you‘ll engage in to be able to interact with others effectively, and process social information. For example, all of us has the ability to recognize various social cues, most often in people‘s faces to let us know how they‘re doing and how they‘re responding to whatever we‘re interacting with them and however we‘re talking with them, and people with schizophrenia have a profound deficit in being able to pick up these kind of cues, which you can only imagine, I mean look if you have difficulty remembering and keeping track of things in a conversation, and you can‘t kind of tell how a person is reacting to it because you‘re having difficulty judging their facial expressions of emotion,

51 then that puts you at a great disadvantage for building relationships, for interacting effectively, and being able to act wisely in social situations. So these have become strong predictors of how people with schizophrenia are going to do, and how people with schizophrenia are doing currently, and they‘re even stronger than the positive symptoms of the disorder, right, so those things are very important, and will certainly limit your ability to get along with others and function. But after it‘s all said and done and you get some good medicine and you get those taken care of, these are some of the residual symptoms that are left that we need to focus on in order to help these guys build a good quality of life and eventually recover from the disease, so that‘s a nice long digression to what we‘ve been up to here in Pittsburgh, working on a therapy to improve cognition in schizophrenia. It‘s a psychosocial treatment developed by a social worker by the name of Jerry Hogarty, who has developed, he‘s the king of psychosocial treatments in schizophrenia, has developed these treatments for many many years, his latest and kind of culmination of his work is Cognitive Enhancement Therapy, which as the name suggests is a therapy designed to work on improving or enhancing cognition in schizophrenia. So because we have medications that can address these positive symptoms, what you‟re talking about is really the next step in the treatment of schizophrenia and, so if I were a social workers out there, and I said “Oh, ok, great, everything‟s great, my client‟s doing well, taking her medication, and she‟s not hearing voices, the paranoia is under control, everything is good to go”, you‟re suggesting “No”. I would certainly argue with that, I think the challenge for us as social workers is to not stop at, oh they‘re taking their meds, you know they haven‘t gotten in trouble lately, they‘re not hearing voices, they don‘t close the blinds all the time because they think the CIA‘s after them, you know for many years that was like doing great for people with schizophrenia, and the challenge for us is to begin to step beyond that because you know if all that we are doing is helping these people take their medicine, and helping these people feel a little less you know influenced by their delusions, I think we‘re not doing enough. I think the people that we serve would say ―You know, I want a little something more than stability, I want a life.‖

The Complete Family Guide to Schizophrenia: Helping Your Loved One Get the Most Out of Life (Paperback) - Do people with schizophrenia ever get better? With the vast majority of those with the disorder dependent on their families for care, close relatives often grapple with that question. The Complete Family Guide to Schizophrenia inspires hope. Authors Kim T. Mueser, PhD, and Susan Gingerich, MSW, walk readers through a range of treatment and support options that can lead to a better life for the entire family. Individual chapters highlight special issues for parents, siblings, and partners, while other sections provide tips for dealing with problems including cognitive difficulties, substance abuse, and psychosis. Families learn to help their loved ones manage day-today tasks, develop friendships, and set personal life goals. Like no other book, this powerful, practical resource helps families stay connected to the individual behind the disorder so they can work together toward recovery. Surviving Schizophrenia : A Manual for Families, Patients, and Providers (5th Edition) by E. Fuller Torrey (Author), Publisher: Quill; 5th edition (April 1, 2006) ISBN: 0060842598 Dr. E. Fuller Torrey's book "Surviving Schizophrenia" is an book we highly recommend for every family affected by schizophrenia. Dr. Torrey is a leader in the schizophrenia research field, and has a sister with schizophrenia, so in writing this book he has drawn from extensive personal, clinical and research experience. Diagnosis: Schizophrenia by Rachel Miller (Editor), Susan Elizabeth Mason (Editor), Publisher: Columbia University Press; (October 15, 2002) ISBN: 0231126255 Diagnosis: Schizophrenia recounts the journeys of thirty-five young people who have been diagnosed with schizophrenia. The book is designed for those who wish to understand how it feels to have the disease, including the patients themselves, family members, students and anyone with an interest in how people sustain hope through a debilitating illness. The book is unique because people who have schizophrenia provided their personal stories and helped to design and edit much of the book. A panel of experts - including psychiatrists, psychologists, nurses, social workers and psychiatric rehabilitation workers - contributed to and reviewed the manuscript to ensure that the content is accurate and up to date. I am Not Sick, I Don't Need Help! - Helping the Seriously Mentally Ill Accept Treatment by Xavier Amador, Anna-Lica Johanson (Contributor), Publisher: Vida Press; (June 2000) ISBN: 0967718902 -

53 This book helps you learn what the latest research says about why so many do not believe they are ill, why they refuse treatment, and how you can help. A good book for people to read if they have a family member or friend who does not understand they have schizophrenia and don't think they need help. It is written for families and therapists, and also available in Spanish (see directly below) No Estoy Enfermo! No Necesito Ayuda! by Dr. Xavier Amador, with Anna-Lisa Johanson 50 Signs of Mental Illness : A Guide to Understanding Mental Health by James Whitney Hicks. Publisher: Yale University Press (April 2005). ISBN: 0300106572 Day-to-Day Coping Strategies for Families

After a family has learned the basics about schizophrenia in the "Introductory" books above, we recommend the following books be read for ideas and suggestions on how to deal with the many unique, day-to-day challenges that you'll face when trying to help and live with a mentally ill person. Surviving Mental Illness: Stress, Coping, and Adaptation by Agnes B. Hatfield, Harriet P. Lefley, John S. Strauss, Publisher: Guilford Press; (May 21, 1993) ISBN: 0898620228 How to Live With a Mentally Ill Person: A Handbook of Day-To-Day Strategies by Christine Adamec, D. J. Jaffe, Publisher: John Wiley & Sons; (April 1996) ASIN: 0471114197 Adamec, herself the mother of a schizophrenic daughter, presents a handbook for developing daily coping and caregiving skills. Not intended to describe, diagnose, or treat any particular mental illness, this book instead advises the caregiver on how to balance the needs of the family as a whole and suggests strategies for dealing effectively with common and serious symptoms (e.g., hallucinations, poor hygiene) and situations (e.g., refusals to take medication, disagreements between the caregiver and doctors or therapists). When Someone You Love Has a Mental Illness: A Handbook for Family, Friends, and Caregivers, by Rebecca Woolis, Agnes Hatfied, Publisher: J. P. Tarcher; (September 1992) ISBN: 0874776953 Overcoming Depression, 3rd edition by Demitri Papolos, Publisher: Quill; 3rd edition (February 1997), ISBN: 0060927828 Schizophrenia & Related Medications (Antipsychotics)

Better Than Prozac: Creating the Next Generation of Psychiatric Drugs by Samuel H. Barondes. Publisher: Oxford University Press; (May 1, 2003). ISBN: 0195151305 The Essential Guide to Psychiatric Drugs : Includes The Most Recent Information On: Antidepressants, Tranquilizers and Antianxiety Drugs, Antipsychotics, Drugs and Pregnancy, Drugs and the Elderly, Drugs and AIDS, Side-effects and Withdrawal

54 Symptoms, and Much, Much More by Jack M., M.D. Gorman, Publisher: St. Martin's Press; (December 1998), ISBN: 0312954581 This book is a good guide to psychiatric drugs that has been popular with patients and families since the first edition was published in 1990. It includes not only a summary of each drug used for all the major psychiatric disorders, but also chapters on issues such as "Sex and psychiatric drugs", "Psychiatric drugs and pregnancy", etc. Breakthroughs in Antipsychotic Medications: A Guide for Consumers, Families, and Clinicians. by Peter J. Weiden (Editor), Publisher: W.W. Norton & Company; (May 1999) ISBN: 0393703037 Peter Weiden's book on anti-psychotic medications provides a good overview of most of the medications that you'll likely run into when you have a family member with schizophrenia. It is written for family members so it is a book that anyone can read and get value from. The key drawback of the book is generally perceived to be its uncritical enthusiasm for the newer drugs and the implicit assumption that all people with schizophrenia should be switched to newer medications. As has become increasingly clear, the more recently-introduced drugs also have many problems and side-effects. Consumer's Guide to Psychiatric Drugs, by John D. Preston, John H. O'Neal, Mary C. Talaga, Publisher: New Harbinger Pubns; (2000) ASIN: 157224111X Preventing Schizophrenia

Research in the area of preventing schizophrenia is still relatively new and there are currently no "proven" techniques for lowering the risk of development of schizophrenia. Research is, however, increasingly suggesting that there are approaches to parenting as well as reductions in environmental exposure to stress, toxins and drugs, etc. - that may significantly lower the risk of a child (who is biologically predisposed) of developing schizophrenia later in life. See schizophrenia prevention for more information on the broad range of factors that have been linked to higher risk of schizophrenia. Recent research has indicated that raising children ( who are biologically predisposed to schizophrenia) in lower-stress families and environments (compared to dysfunctional families) has been linked to as much as an 86% lower risk of schizophrenia. Given this research result - we recommend the following books to help parents understand parenting styles that research has shown to be beneficial in raising children that are more resilient to mental health challenges: 

Parenting From the Inside Out, By Daniel J. Siegel, M.D. and Mary Hartzell, M. Ed. - an excellent general book on parenting that we highly recommend for all families. Drawing upon important new findings in neurobiology and attachment research, they explain how interpersonal relationships directly impact the development of the brain, and offer parents a step-by-step approach to forming a deeper understanding of their own life stories that will help them raise compassionate and resilient children." We highly recommend you read this interview with Daniel Siegel: The neuropsychology of the playground

55 

What am I feeling, By Dr. John Gottman. A good book (but very short - only 48 pages and many photos) to teach parents how to help children express and process emotions in a healthy way. These approaches have proven in research to help children lower their social stress levels and encourage social skills. A good book for parents who want to get a quick understanding of how to help children in their emotional needs, for greater resilience and better mental health in the long term.

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How to Raise An Emotionally Intelligent Child, By Dr. John Gottman - a great book that goes into more depth on how to raise a child that has good emotional processing skills and good social skills, thus lowering social stress that he or she encounters (thus potentially lowering the risk of schizophrenia and other mental health disorders). (Note - if you purchase this book, you probably don't want to purchase the "What am I feeling" book - because this book covers what is in that book, and much more).

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The Magic Years, By Dr. Selma H. Fraiberg - is an excellent book, written by a professor of psychology at the University of San Francisco Medical School, that covers how parents can moderate the amount of stress and anxiety that a child goes through as they grow from birth through age six. A great "general parenting" book that we think every parent of younger children should read.

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The Optimistic Child: Proven Program to Safeguard Children from Depression & Build Lifelong Resilience - Dr. Seligman - a well known research psychologist has a mission here which is to teach parents and other concerned adults how to instill in children a sense of optimism and personal mastery. Seligman discounts prevalent theory that children who are encouraged by others to feel good about themselves will do well. Instead, he proposes that self-esteem comes from mastering challenges, overcoming frustration and experiencing individual achievement. In clear, concise prose peppered with anecdotes, dialogues, cartoons and exercises, Seligman offers a concrete plan of action based on techniques of self-evaluation and social interaction. He describes the development of the Penn Depression Prevention Program, in which school kids are taught ways to divest themselves of pessimistic approaches and adopt optimistic ones, and adapts it to home use by parents. Seligman's recent research profoundly demonstrates that children can be taught techniques of optimistic thinking that, in effect, 'depression-proofs' them and help's lower their social stress.

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Social Intelligence: The New Science of Human Relationships, By Daniel Goleman, PHD - In this book Dr. Goleman, the aclaimed Harvard psychologist and former New York Times writer, discusses how human relationships impact development of the brain. For more information on the book, and several interviews with Dr. Goleman - see: Social Intelligence More Useful Than IQ? Important for Mental Health

The Northumberland Nightmare: When Justice Ignores Mental Illness - by Jr. Paul L. Wegkamp, Paperback: 289 pages , Publisher: Infinity Publishing; (January 28, 2004) ISBN: 0741418479 For more information on this book see the web site: http://www.plwegkamp.com This is a true account of the horror the family went through, from the whirlwind moment of dealing with the unexpected diagnoses of schizophrenia of their son Chad who was in college. The arrest and mistreatment, stigma and ignorance, withheld medical treatment and refusal of bond to the extent of outright blackmail each time the father attempted to file a complaint of his sons treatment from the local law enforcement. Financial Planning with a Mentally ill Child

Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death - The completely revised and greatly expanded 5th edition of Planning for the Future: Providing a Meaningful Life for a Child with a Disability After Your Death discusses all the steps that parents should take to assure a secure and happy life for their disabled son or daughter. Housing and Accommodation for the Mentally Ill

9 Highland Road: Sane Living for the Mentally Il by Michael Winerip, Publisher: Vintage Books; Reprint edition (June 1995) ISBN: 0679761608 Highland Road; is written by a respected New York Times reporter who spent two years hanging around a group home for mentally ill, on Long Island, NY. E.Fuller Torrey suggests that "Perhaps the book's greatest contribution is to illustrate that individuals with schizophrenia need more support, and people who believe in them. A good group home, such as Winerip is describing, provides those things and is an optimal living situation for many people with this diagnosis." Childhood Schizophrenia (Children under the age of 14 years)

Childhood Schizophrenia by Shiela Cantor - Hardcover: 193 pages Publisher: The Guilford Press (June 3, 1988) ISBN: 0898627133 Review of Childhood Schizophrenia: "The concept that a child could have a serious or chronic mental illness has always been difficult for health and mental health professionals to accept or understand. With autistic children, it is not possible to deny the seriousness of the disorder. For other psychotic children, those who look normal and in many ways act normal, it may be difficult to see the child as psychotic or to accept the

57 seriousness of the disorder. Cantor addresses these children. She reviews the literature-a literature that reflects this ambivalence--and then presents her clinical concepts and approaches to treatment for childhood schizophrenia, based on a review of other clinicians' work and on her clinical and research experiences. Perhaps the greatest value of her book is that Cantor forces us to think clearly about this serious and chronic childhood disorder." --Larry B. Silver, MD I Think I Scared Her: Growing Up With Psychosis by Brooke Katz. Publisher: Xlibris Corporation (April 2, 2004). ISBN: 1413445683. Active schizophrenia.com member Brooke Katz writes about her first early experiences (beginning in the third grade) with psychosis, and how she finally was able to find the treatment she needed. A well-written, touching account of what it's like to experience psychosis as a child. Also a good insider's view for parents of children who struggle with psychosis. Christianity and Schizophrenia

Strength For His People: A Ministry for Families of the Mentally Ill - Ordering Details This book explains serious mental illness from a Biblical world view. The primary focus of the book is schizophrenia and the difference between mental illness and demonic possession. The author, Dr. Steven Waterhouse's brother suffers from schizophrenia. Steven's research for Christian answers and help arose from his understanding of what families with mental illness go through, and that there are few Godly resources available to help. Personal, Hopeful Stories on Schizophrenia

Many of the books below are by mental illness consumers themselves. In their own words, they describe their experiences with illness, and their perspectives on recovery and a hopeful future. Divided Minds : Twin Sisters and Their Journey Through Schizophrenia by Pamela Spiro Wagner and Carolyn Spiro, M.D. Publisher: St. Martin's Press (August 1, 2005). ISBN: 0312320647. Pamela Wagner has been an active member on schizophrenia.com for many years; she currently maintains a popular weblog (Wagblog), and her poetry and selected writings are posted on our success stories page. Her new book has received excellent reviews from both Publisher's Weekly and Booklist - see excerpts below: Publisher's Weekly Starred Review. "This harrowing but arresting memoir -- written in alternating voices by identical twins, now in their 50s -- reveals how devastating schizophrenia is to both the victim and those who love her...When the twins were young, Pamela always outshone Carolyn. But in junior high, Pamela was beset by fears and began a lifelong pattern of cutting and burning herself. After the two entered Brown University, Pamela's decline into paranoia accelerated until she attempted suicide.

58 During the ensuing years of Pamela's frequent breakdowns and hospitalizations, Carolyn became a psychiatrist, married and had two children...Remarkably descriptive, Pamela's account details how it feels to hear voices and to suspect evil in everyone. Though she struggles with her medications, Pamela remains a committed poet and is now reconciled with her father and close to her twin." Out of It: An Autobiography on the Experience of Schizophrenia by anonymous. Publisher: iUniverse. Available in paperback or electronic format. Published May 2005. Description (by the author): Out of It: An Autobiography on the Experience of Schizophrenia offers a thorough understanding of the true nature of what it is like to have schizophrenia...it guides us through one man‘s mental journey through seven months of schizophrenia. Breakdown Lane, Traveled: An Anthology of Writings on Madness by Julie Greene. Publisher: Authorhouse. Available in paperback or electronic format. Julie Greene seemed like a bright, happy child to her parents and teachers, but into adulthood, she entered into a horrific, long-term battle with serious mental illness. During this time, she struggled within the walls illness imposed on her, and believed she would never recover. But after eighteen years of suffering, Greene emerged whole, in 1998 at the age of forty. "Here," she says, "life began." With this book, Greene hopes to illustrate to those who are unfamiliar with mental illness what really happens in the mini-world of madness. For those who‘ve had experiences with mental illness, or has a family member who is ill, Greene hopes to provide comfort and hope – and laughter Recovered, Not Cured by Richard McLean. Publisher: Allen & Unwin. Currently available for ordering from the publisher in Australia - will be available in the US, Canada, Japan in May 2005. Author Richard McLean shares his own journey with schizophrenia, and these days the graphic artist/illustrator for the Australian newspaper The Age calls himself "recovered, not cured." In the book's introduction, he says "I hope that this book will help to demystify [mental illness], so that the 10 per cent of people directly or indirectly affected will receive the empathy and care they need. The book has been excellently received by reviewers in Australia. It is in the Highly Commended 2003: Human Rights Award Arts Non-fiction category, and is the winner of the SANE Book of the Year award for 2004. I Think I Scared Her: Growing Up With Psychosis by Brooke Katz. Publisher: Xlibris Corporation (April 2, 2004). ISBN: 1413445683. Active schizophrenia.com member Brooke Katz writes about her first early experiences with psychosis, and how she finally was able to find the treatment she

59 needed. A well-written, touching account of what it's like to experience psychosis as a child. The Quiet Room: A Journey Out of the Torment of Madness by Lori Schiller, Publisher: Warner Books; (January 1996) ISBN: 0446671339 Lori Schiller's story is a very positive and hopeful story that we recommend for every family impacted by schizophrenia. The Day the Voices Stopped: A Schizophrenic's Journey from Madness to Hope by Ken Steele, Claire Berman, Publisher: Basic Books; (May 7, 2002) ISBN: 0465082270, A good, in-depth Review of Ken Steele's Book Ken Steele, a well-known advocate for the mentally ill, has a very positive story to tell. Welcome, Silence: My Triumph over Schizophrenia by Carol S., M.D. North, Publisher: Simon & Schuster; (June 1987) ASIN: 0671528343 Carol North's autobiographical story of her triumph over schizophrenia includes a good description of the experience of auditory hallucinations and the personal battles against the symptoms of the disease, but her case is also atypical in many ways (she was one of the few patients who responded dramatically to an experimental treatment that rarely worked for other people with schizophrenia). A Beautiful Mind: The Life of Mathematical Genius and Nobel Laureate John Nash by Sylvia Nasar, Publisher: Touchstone Books; (November 27, 2001) ISBN: 0743224574 The well known "A beautiful mind" has received many good reviews and has been a best seller, however it‘s a long book about a unique situation and not generally relevant for families of people with schizophrenia (we recommend the movie over the book). Books for Wives and Husbands People with Schizophrenia

Parenting from the Inside Out; How deeper self-understanding can help you raise children that thrive by Daniel Siegel, Mary Hartzell, Paperback: 272 pages, Publisher: Tarcher (April 26, 2004), ISBN: 1585422959 . A highly recommended book! This is an excellent book for any person married to a person who has schizophrenia (or other serious brain disorder) and who has children. People who have schizophrenia typically have many emotional and communication challenges (i.e. lack of emotion or flat emotion, or inappropriate emotions or emotional responses, lack of empathy, unpredictability, etc.) and therefore the other parent must compensate for these deficits or the child will suffer from many psychiatric problems later in life. This book - based on the latest research into child development, psychology and brain development - is an excellent resources for spouses of the mentally ill who have children, as well as for adult children of the mentally ill. This is an important book on a very important issue for families challenged by schizophrenia (and a good read for any parent or future parent, really).

60

Books for Brothers and Sisters, and Sons and Daughters of People with Schizophrenia

Never Have Your Dog Stuffed : And Other Things I've Learned (By Alan Alda) Hardcover: 240 pages, Publisher: Random House (September 13, 2005), Language: English , ISBN: 1400064090 The famous actor Alan Alda has recently (late 2005) published an autobiography in which he talks a great deal about his mother's schizophrenia. The book is titled: Never Have Your Dog Stuffed : And Other Things I've Learned (click for book details) "My mother didn't try to stab my father until I was six," actor and author Alan Alda writes at the beginning of his autobiography. The child of a well-known actor, Alda (born Alphonso D'Abruzzo) spent his early years on the road with a burlesque troupe. The time spent on the stage wings, watching his father perform, made a profound impact on the youngster, igniting a desire to entertain others that has stayed with him his entire life. Just as profound was his mother's losing battle with mental illness; Alda spent much of his adult life attempting to reconcile his resentment of her outbursts and unmanageable behavior coupled with her unbridled enthusiasm for life and encouragement. The Skipping Stone: The Rippling Effect of Mental Illness in the Family by Mona Wasow, Publisher: Science & Behavior Books; (July 1995) ASIN: 083140082X, (This book is out of print but may be available in used book stores and in your local library). The Skipping Stone is a highly-recommended book that is a summary of 100 interviews done with family members of individuals with a serious mental illness documenting the effect on the siblings, spouses, grandparents, and children of affected individuals. When Madness Comes Home: Help and Hope for the Children, Siblings, and Partners of the Mentally Ill by Victoria Secunda, Publisher: Hyperion; Reprint edition (August 1998) ASIN: 078688326X Highly recommended - Victoria Secunda's book is on the impact of schizophrenia on siblings, and can help parents and family members understand the effect of one person's mental illness on children and others in the family. Hidden Victims - Hidden Healers: An Eight Stage Healing Process for Family and Friends of the Mentally Ill, By Julie Johnson, Publisher: P E M A Pubns Inc; 2nd edition (July 1994) ISBN: 0964043009 My Sister's Keeper: Learning to Cope with a Sibling's Mental Illness by Margaret Moorman, Publisher: W.W. Norton & Company; (February 2002) ISBN: 0393324044 Mad House: Growing Up in the Shadow of Mentally Ill Siblings by Clea Simon, Publisher: Penguin USA (Paper); (May 1998) ISBN: 0140274340

61 Parenting from the Inside Out; How deeper self-understanding can help you raise children that thrive by Daniel Siegel, Mary Hartzell, Paperback: 272 pages, Publisher: Tarcher (April 26, 2004), ISBN: 1585422959 . This is an excellent book for any child of a person who has schizophrenia, and potentially for siblings of people with schizophrenia or other major brain disorder. (bipolar disorder, etc.). People who have schizophrenia typically have many emotional and communication issues (i.e. lack of emotion or flat emotion, or inappropriate emotions or emotional responses, lack of empathy, unpredictability, etc.) that can seriously impact the development of the child if the other parent doesn't compensate for these behaviors and emotions. This book - based on the latest research into child development, psychology and brain development - is an excellent resources for adult children of the mentally ill - to understand the impact that having a mentally ill parent has had on them, and how the problems would likely cause problems for the next generation of children if the issues are not addressed. This is an important book on a very important issue for families challenged by schizophrenia (and a good read for any parent or future parent, really). Growing Up With a Schizophrenic Mother by Margaret J. Brown, Doris Parker Roberts, Publisher: McFarland & Company; (August 2000), ISBN: 0786408200 My Mother's Keeper: A Daughter's Memoir of Growing Up in the Shadow of Schizophrenia by Tara Elgin Holley, Joe Holley (Contributor), Publisher: William Morrow; Reprint edition (July 1998) ASIN: 0380723026 The Outsider: A Journey into My Father's Struggle With Madness by Nathaniel Lachenmeyer, Publisher: Broadway Books; (August 14, 2001) ISBN: 0767901916 Imagining Robert: My Brother, Madness, and Survival: A Memoir by Jay Neugeboren, Publisher: Rutgers University Press; (May 2003), ISBN: 0813532965, There is also a film made about this book - see the video/film section. Angelhead: My Brother's Descent Into Madness By Greg Bottoms, Paperback: 207 pages Publisher: Three Rivers Press (CA); 1 Pbk ed edition (September 4, 2001) , ASIN: 0609807145, What is it like to watch your older brother quickly progress from someone you know to someone completely foreign to you? And what must it be like to live through the guilt and anguish that comes with this? These questions are answered in "Angelhead," Greg Bottoms' brutal and often poetic account of his brother Michael's battle with schizophrenia. Rescuing Patty Hearst: Memories From a Decade Gone Mad By Virginia Holman. As a child, Holman was held captive by her schizophrenic mother in a 700-squarefoot cabin with cement floors and no ceilings in rural Virginia; her book tells the story.

62 She received a Rosalynn Carter Mental Health Journalism Fellowship for 2003-2004. Publisher: Simon & Schuster; (March 6, 2003), ISBN: 0743222857 Internet Resources Schizophrenia.com A non-profit community providing in-depth information, support and education related to schizophrenia, a disorder of the brain and mind. www.schizophrenia.com NARSAD 800-829-8289 http://www.narsad.org/dc/patients_families/ NARSAD has an information and referral center which can be reached at 1-800-8298289. Their website has downloadable brochures on schizophrenia and understanding anti-psychotic medications and research articles on topics relating to schizophrenia. Schizophrenics Anonymous Offers support groups for people with schizophrenia. To find out about Schizophrenics Anonymous support groups in your area, contact your local Mental Health America affiliate http://www.mentalhealthamerica.net/go/searchMHA or your local NAMI http://www.nami.org/ (Use the Find Support option to find your local NAMI group). NAMI (National Alliance on Mental Illness) http://www.nami.org/ NAMI offers support groups for family members of individuals with a serious mental illness. To find the support group nearest you, use the Find Support option on their website. Their Family-to-Family Education Program (http://www.nami.org/template.cfm?Section=Family-to-Family&lstid=751) is a 12 week educational program designed to help family members better understand mental illness and learn coping and communication skills to help deal with an ill family member. NAMI also offers a legal referral center, information about medications, and other resources. MayoClinic.com http://www.mayoclinic.com/health/schizophrenia/DS00196 Medline Plus http://www.nlm.nih.gov/medlineplus/schizophrenia.html

How to Help when a person with a mental illness has been arrested (PDF file for downloading) - A handbook (in Adobe Acrobat format) that is a joint project of NAMI New York State and the Urban Justice Center Mental Health Project. Good general advice as to what procedures to follow when a person with mental illness is arrested.

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People with Serious Mental Illnesses in Jail and Prison - Bazalon Center

MENTAL HEALTH DISORDERS OF CHILDHOOD AND ADOLESCENCE: SCHIZOPHRENIA ... iors or disorders that may appear similar are included, but are in fact different than symp- ... Depressive disorder ... disorders, fifth edition (DSM-5).

machine that sweeps them along? We have been criticized for overquoting literary authors. But when one writes, the only question is which other machine the literary machine can be plugged into, must be plugged into in order to work. Kleist and a mad

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